Fifth Report of the National Transplant Registry 2008

FIFTH

REPORT OF THE

NATIONAL TRANSPLANT REGISTRY

2008

Editors Hooi LS Lela Yasmin Mansor

With contributions by:

Alan Teh KH, Chan LL, Shamala R, Chandramalar S, Mohamed Ezani, David Chew SP, Ashari Yunus, Ganesalingam K, Goh BL, Suzina Sheikh August 2010 National Transplant Registry, Malaysia

ISSN 1823-5719

Published by: National Transplant Registry Level 5, Menara Wisma Sejarah 230, Jalan Tun Razak 50400 Kuala Lumpur Malaysia

Tel : (603) 2681 5948 Fax : (603) 2681 5949 e-mail : [email protected] Website: http://www.mst.org.my

This report is copyrighted. However it may be freely reproduced without the permission of the National Transplant Registry. Acknowledgement would be appreciated.

Suggested citation of this report is as follows: Hooi LS, Lela Yasmin Mansor (Eds). Fifth Report of the National Transplant Registry Malaysia 2008. Kuala Lumpur 2010.

The electronic version of this report can be downloaded at: http://www.mst.org.my/ntrSite

Disclaimer There is a potential that data for previous years printed in this report are different from what were printed in previous reports. This is because analysis for this report is based on the latest dataset in the web which may have been updated by SDP. FORWARD

It is with great pleasure that the Malaysian Society of Transplantation presents the 5th Annual Report (2008) of the National Transplant Registry containing updated data and statistics on the entire range of transplant activities, from organ donation to transplantation, and its outcomes. Registries are the cornerstone of any clinical system and are the key to monitoring the performance of the system.

The National Transplant Registry was established in 2003 by the combined efforts of the Malaysian Society of Transplantation and the Ministry of Health Malaysia to collect and maintain a database of all transplant related activities in Malaysia. This database serves as an important national resource of transplant related information and helps in planning the development and delivery of future transplant services for the benefit of all Malaysians.

The NTR is an incredible resource of information for clinicians, researchers, health care planners and administrators. It helps us to better understand the need for transplantation and the need to improve the clinical care and overall clinical outcomes for all individuals who have had an organ or tissue transplant. The data provided by each transplant programme is verified and analysed as a whole and can be viewed online at http://www.mst.org.my.

I would like to thank Dr. Hooi Lai Seong, Datin Dr. Lela Yasmin Mansor and the various expert panels for their ongoing support and commitment to the registry in preparing, editing and proof reading this report. I would also like to thank all the source data providers from the public and private hospitals and university medical centres for collaborating and contributing their data to the National Transplant Registry over the years. The credit for the strength of our transplant registry goes entirely to the diligence of the transplant registry staff that have painstakingly dissected and verified the medical information to provide exceptional quality data. A special thanks to the members of the Expert Panels, the Transplant Registry Unit and the Governance Board for their tremendous contributions to the success of this registry.

It is hoped that with the continued cooperation and participation of all parties involved, it will be possible to ensure that the data remains available and worthy for studies in the future. It is thus vital that the quality of the data and the integrity of the current database be maintained and supported for these purposes.

I hope that in the coming years we will be able to secure adequate funding for the registry to go online in real time. A web-based registry will be able to seamlessly integrate and provide data of the various transplant activities in the country readily at any given point in time.

Datuk (Mr) Harjit Singh MBBS; FRCS Ed; FRCSI President, Malaysian Society of Transplantation

i ACKNOWLEDGEMENTS

The National Transplant Registry would like to record its appreciation to everyone who have helped made this report possible.

We would especially like to thank the following:

x Our source data providers that are the transplant surgeons, physicians and staff of all organ and tissue transplant centres and transplant follow up centres from the government, universities and private sectors, without whose commitment, hard work and timely data submission, there will be no report

x National Renal Registry for sharing the renal transplant data

x Clinical Research Centre, Hospital Kuala Lumpur

x Ministry of Health, Malaysia

x The members of the various expert panels for their expertise and for devoting their valuable time and effort in preparing and writing the various chapters

x Information technology personnel namely Ms Lim Jie Ying (database administrator), Mr Sebastian Thoo (programmer), Mr Rakesh A/L M. Jaya Prakasam (web application programmer) and Ms Azizah Alimat (desktop publisher)

x Statistician Ms Lena Yeap Lay Ling

x Roche (M) Sdn. Bhd. for their financial contribution to the registry yearly

x Many others, whose names are not listed here, for their support.

ii PARTICIPATING CENTRES

Discipline: Blood and Marrow Transplant

1. Ampang Puteri Specialist Hospital 2. Division of Haematology, Department of Medicine, University of Malaya Medical Centre 3. Haematology Department, Hospital Ampang 4. Haematology Department, Sime Darby Medical Centre Subang Jaya 5. Haemapoietic Stem Cell Transplant Unit, Hospital Universiti Sains Malaysia 6. Maybank BMT Centre, Universiti Kebangsaan Malaysia Medical Centre 7. Oncology-Haematology Department, Gleneagles Medical Centre, Penang 8. Oncology-Haematology Department, Lam Wah Ee Hospital 9. Paediatric BMT Unit, Department of Paediatrics, University of Malaya Medical Centre 10. Paediatric BMT Unit, Institute of Paediatrics, Hospital Kuala Lumpur 11. Paediatric BMT Unit, Sime Darby Medical Centre Subang Jaya

Discipline: Bone and Tissue Transplant

1. Bone Bank, Hospital Kuala Lumpur 2. Bone Bank, University of Malaya Medical Centre 3. Department of Orthopaedic & Traumatology, Hospital Kangar 4. Department of Orthopaedic Surgery, Hospital Sultanah Bahiyah 5. Department of Orthopaedic Surgery, Hospital Taiping 6. Department of Orthopaedic Surgery, University of Malaya Medical Centre 7. Department of Orthopaedics, Hospital Ipoh 8. Department of Orthopaedics, Hospital Kajang 9. Department of Orthopaedics, Hospital Kuantan 10. Department of Orthopaedics, Hospital Pulau Pinang 11. Department of Orthopaedics, Hospital Raja Perempuan Zainab II 12. Department of Orthopaedics, Hospital Seberang Jaya 13. Department of Orthopaedics, Hospital Sultanah Aminah 14. Department of Orthopaedics, Hospital Sultanah Nur Zahirah 15. Department of Orthopaedics, Hospital Tengku Ampuan Rahimah 16. Department of Orthopaedics, Hospital Universiti Sains Malaysia 17. Department of Orthopaedics, Sarawak General Hospital 18. Department of Orthopaedics, Sultanah Fatimah Specialist Hospital 19. Department of Orthopaedics, Traumatology and Rehabilitation, International Islamic University Malaysia 20. Department of Surgery, Hospital Raja Perempuan Zainab II 21. Hospital Fatimah, Ipoh 22. Institute of Orthopaedic & Traumatology, Hospital Kuala Lumpur 23. Island Hospital, Penang 24. Kota Bharu Medical Centre 25. Malaysian Nuclear Agency 26. National Tissue Bank, Universiti Sains Malaysia 27. Normah Medical Specialist Centre, Kuching 28. Ophthalmology Department, Hospital Kuala Lumpur 29. Ophthalmology Department, Hospital Sultanah Bahiyah 30. Ophthalmology Department, Hospital Sungai Buloh 31. Ophthalmology Department, Hospital Teluk Intan iii Discipline: Bone and Tissue Transplant

32. Ophthalmology Department, Hospital Tengku Ampuan Afzan 33. Ophthalmology Department, Hospital Tengku Ampuan Rahimah 34. Ophthalmology Department, Hospital Universiti Sains Malaysia 35. Ophthalmology Department, Sri Kota Medical Centre 36. Timberland Medical Centre, Kuching 37. Wan Orthopaedic, Trauma & Sports Injury Centre, Seremban Specialist Hospital

Discipline: Cornea Transplant

1. Eye Clinic, Mahkota Medical Centre 2. Hope Eye Centre, Gleneagles Intan Medical Centre, Kuala Lumpur 3. International Specialist Eye Centre, Kuala Lumpur 4. K.C. Yeo Eye Specialist Centre, Melaka 5. Ophthalmology Department, 94 Hospital Angkatan Tentera Kem Terendak 6. Ophthalmology Department, Gleneagles Medical Centre, Penang 7. Ophthalmology Department, Hospital Batu Pahat 8. Ophthalmology Department, Hospital Bukit Mertajam 9. Ophthalmology Department, Hospital Duchess of Kent 10. Ophthalmology Department, Hospital Ipoh 11. Ophthalmology Department, Hospital Kangar 12. Ophthalmology Department, Hospital Kuala Lipis 13. Ophthalmology Department, Hospital Kuala Lumpur 14. Ophthalmology Department, Hospital Kuala Pilah 15. Ophthalmology Department, Hospital Melaka 16. Ophthalmology Department, Hospital Mentakab 17. Ophthalmology Department, Hospital Miri 18. Ophthalmology Department, Hospital Pakar Sultanah Fatimah 19. Ophthalmology Department, Hospital Pantai Indah 20. Ophthalmology Department, Hospital Pulau Pinang 21. Ophthalmology Department, Hospital Putrajaya 22. Ophthalmology Department, Hospital Queen Elizabeth, Kota Kinabalu 23. Ophthalmology Department, Hospital Raja Perempuan Zainab II 24. Ophthalmology Department, Hospital Selayang 25. Ophthalmology Department, Hospital Sibu 26. Ophthalmology Department, Hospital Sultan Ismail Pandan 27. Ophthalmology Department, Hospital Sultanah Aminah 28. Ophthalmology Department, Hospital Sultanah Bahiyah 29. Ophthalmology Department, Hospital Sultanah Nur Zahirah 30. Ophthalmology Department, Hospital Sungai Buloh 31. Ophthalmology Department, Hospital Sungai Petani 32. Ophthalmology Department, Hospital Taiping 33. Ophthalmology Department, Hospital Tawau 34. Ophthalmology Department, Hospital Teluk Intan 35. Ophthalmology Department, Hospital Tengku Ampuan Afzan 36. Ophthalmology Department, Hospital Tengku Ampuan Rahimah 37. Ophthalmology Department, Hospital Tuanku Ja’afar 38. Ophthalmology Department, Hospital Umum Sarawak 39. Ophthalmology Department, Hospital Universiti Kebangsaan Malaysia 40. Ophthalmology Department, Hospital Universiti Sains Malaysia iv Discipline: Cornea Transplant

41. Ophthalmology Department, Sri Kota Medical Centre 42. Ophthalmology Department, University of Malaya Medical Centre 43. Pusat Pakar Mata Centre For Sight, PJ 44. Puteri Specialist Hospital, Johor Bahru 45. Sunway Medical Centre 46. Tan Eye Specialist Centre, Sunway Medical Centre 47. Tun Hussein Onn National Eye Hospital

Discipline: Heart and Lung Transplant

1. Cardiothoracic Department, Institut Jantung Negara 2. Institut Perubatan Respiratori, Hospital Kuala Lumpur

Discipline: Heart Valve Transplant

Cardiovascular Tissue Bank, Department of Cardiothoracic Surgery, 1. Institut Jantung Negara

Discipline: Liver Transplant

1. Department of Paediatrics, University of Malaya Medical Centre 2. Hepatobiliary Department, Hospital Selayang 3. Paediatric Hepatology Unit, Hospital Selayang 4. Institute of Paediatrics, Hospital Kuala Lumpur 5. Sime Darby Medical Centre Subang Jaya

Discipline: Renal Transplant

1. C. S. Loo Kidney & Medical Specialist Centre 2. Damai Medical & Heart Clinic 3. Fan Medical Renal Clinic 4. Kidney Unit, Assunta Hospital 5. Klinik Dr Choo & Liew 6. Nephrology Clinic (Renal Transplant), Hospital Kuala Lumpur 7. Nephrology Clinic (Renal Transplant), Hospital Kuala Lumpur (Paed) 8. Renal Transplant Clinic, Hospital Batu Pahat 9. Renal Transplant Clinic, Hospital Bintulu 10. Renal Transplant Clinic, Hospital Duchess of Kent 11. Renal Transplant Clinic, Hospital Dungun 12. Renal Transplant Clinic, Hospital Kemaman 13. Renal Transplant Clinic, Hospital Kluang 14. Renal Transplant Clinic, Hospital Labuan 15. Renal Transplant Clinic, Hospital Likas 16. Renal Transplant Clinic, Hospital Melaka 17. Renal Transplant Clinic, Hospital Mersing 18. Renal Transplant Clinic, Hospital Miri v Discipline: Renal Transplant

19. Renal Transplant Clinic, Hospital Pakar Sultanah Fatimah 20. Renal Transplant Clinic, Hospital Pantai Penang 21. Renal Transplant Clinic, Hospital Pontian 22. Renal Transplant Clinic, Hospital Pulau Pinang 23. Renal Transplant Clinic, Hospital Queen Elizabeth 24. Renal Transplant Clinic, Hospital Raja Perempuan Zainab II 25. Renal Transplant Clinic, Hospital Raja Permaisuri Bainun 26. Renal Transplant Clinic, Hospital Segamat 27. Renal Transplant Clinic, Hospital Selayang 28. Renal Transplant Clinic, Hospital Serdang 29. Renal Transplant Clinic, Hospital Sibu 30. Renal Transplant Clinic, Hospital Sultan Ismail 31. Renal Transplant Clinic, Hospital Sultanah Aminah 32. Renal Transplant Clinic, Hospital Sultanah Bahiyah 33. Renal Transplant Clinic, Hospital Sultanah Nur Zahirah 34. Renal Transplant Clinic, Hospital Taiping 35. Renal Transplant Clinic, Hospital Tawau 36. Renal Transplant Clinic, Hospital Tengku Ampuan Afzan 37. Renal Transplant Clinic, Hospital Tengku Ampuan Rahimah 38. Renal Transplant Clinic, Hospital Tuanku Ja’afar 39. Renal Transplant Clinic, KPJ Ampang Puteri Specialist Hospital 40. Renal Transplant Clinic, KPJ Selangor Specialist Hospital 41. Renal Transplant Clinic, Normah Medical Specialist Centre 42. Renal Transplant Clinic, Prince Court Medical Centre 43. Renal Transplant Clinic, Pusat Perubatan Universiti Kebangsaan Malaysia 44. Renal Transplant Clinic, Renal Care (Ipoh Specialist Hospital) 45. Renal Transplant Clinic, Sabah Medical Centre 46. Renal Transplant Clinic, Sarawak General Hospital 47. Renal Transplant Clinic, Selangor Medical Centre 48. Renal Transplant Clinic, Sime Darby Medical Centre Subang Jaya 49. Renal Transplant Clinic, Sri Kota Medical Centre 50. Renal Transplant Clinic, Sunway Medical Centre 51. Renal Transplant Clinic, Universiti Sains Malaysia Hospital 52. Renal Transplant Clinic, University Malaya Medical Centre 53. Renal Transplant Clinic (Paed), Ward 8C&D, Hospital Sultan Ismail 54. Simon Wong Medical & Kidney Clinic, Timberland Medical Centre 55. Smartcare Dialysis Centre, Subang Jaya 56. Tan Medical Renal Clinic 57. Wee Kidney & Medical Specialist Clinic

vi ABOUT THE NATIONAL TRANSPLANT REGISTRY

The National Transplant Registry (NTR) is a Ministry of Health (MOH) supported registry whose aim is to collect information about organ and tissue transplantations in Malaysia. The information allows us to estimate the magnitude of transplant activity in the country. Such information besides being useful to transplantation practitioners may be used in assisting the MOH, non-governmental organisations, private providers and industry in program planning and evaluation of transplantation services.

The objectives of NTR are to: 1. Determine the frequency and distribution of all types of transplantation activity in Malaysia. 2. Determine the outcomes of transplantation. 3. Determine the factors influencing outcomes of transplantation. 4. Evaluate transplantation services in the country. 5. Stimulate and facilitate research on transplantation and its management.

The NTR receives data on organ / tissue transplantation from 3 main sources: 1. The individual doctors who provide transplantation services, who voluntarily report data to the NTR. Data collection will be from seven main types of transplantation services: x Blood and Marrow Transplant x Cornea Transplant x Heart and Lung Transplant x Liver Transplant x Renal Transplant x Heart Valve Transplant x Bone and Tissue Transplant 2. The National Vital Registration system (Jabatan Pendaftaran Negara). Their data is useful for determining or verifying mortality outcomes of transplant patients. 3. Information Documentation Unit of the MOH, which operates the Health Management Information System (HMIS).

NTR SPONSORS x Medical Development Division, MOH x National Transplant Coordinating Committee x Malaysian Society Of Transplantation x Clinical Research Centre, Hospital Kuala Lumpur

vii GOVERNANCE BOARD

The Governance Board is established to govern the NTR and the terms of reference are as follows: 1. Provide the necessary leadership and direction for the National Transplant Registry. 2. Ensure that the vision, objectives and goals of the National Transplant Registry are clearly established and that strategies are in place for achieving them. 3. Establish policies and procedures for the proper functioning of the National Transplant Registry. 4. Seek input and feedback from all stakeholders and end users with regards to their expectations and the performance of the National Transplant Registry. 5. Secure funding and financial support for the National Transplant Registry. 6. Galvanize the commitment of all interested parties to the National Transplant Registry. 7. Receive and review the annual report from the steering committee.

Current members of the Governance Board are as follows:

Chairperson Dato’ Dr Zaki Morad Mohd Zaher

Vice Chairperson Datin Dr Fadhilah Zowyah Lela Yasmin Mansor

Members: Datuk (Mr) Harjit Singh Malaysian Society of Transplantation Dr Teng Seng Chong Medical Development Division, Ministry of Health Tan Sri Dato’ Seri Dr Mohd. Ismail Merican Malaysian Liver Foundation Mr Rohan Malek Malaysian Urological Association Dr Hooi Lai Seong Malaysian Society of Nephrology Dr Aizai Azan Abdul Rahim National Heart Association of Malaysia Dr Suzina Sheikh Ab. Hamid Malaysian National Tissue Bank Dr Abdul Malik Hussein Malaysian Orthopaedic Association Dr Tan Chwee Choon National Kidney Foundation of Malaysia Dato’ Dr Chang Kian Meng Malaysian Society of Haematology Dato’ Dr M.Venugopal Balchand Malaysian Association of Thoracic & Cardiovascular Surgeons Dr Goh Pik Pin Clinical Research Centre, Hospital Kuala Lumpur & Malaysian Society of Ophthalmology Dr Jamaiyah Haniff Clinical Research Centre, Hospital Kuala Lumpur

Secretariat: Ms Leong Wei Chee

viii EXPERT PANEL

NTR has established seven groups of Expert Panel comprising members of the medical profession and allied health with expert knowledge in these various disciplines:

x Blood and Marrow Transplant x Cornea Transplant x Heart and Lung Transplant x Liver Transplant x Renal Transplant x Heart Valve Transplant x Bone and Tissue Transplant

The role of the Expert Panel is:

1. To undertake quality control of the clinical registry form and the data dictionary as deemed necessary. 2. To undertake quality control of the reported data. 3. To undertake literature review on the relevant area. 4. To interpret the results generated by NTR’s statisticians. 5. To write the section of the NTR report relevant to the panel’s expertise. 6. To specify the data reporting procedure. 7. To facilitate access to source documents for Transplant Registry Unit (TRU) staff to do data verification.

List of Expert Panel members for each respective discipline:

Discipline: Blood and Marrow Transplant

Co-chairperson (Adult) Dr Alan Teh Kee Hean Co-chairperson (Paeds) Prof Dr Chan Lee Lee Members Prof Gan Gin Gin @ Gan Shiaw Sze Dr Hishamshah Mohd Ibrahim Prof Madya Dr S Fadilah Abdul Wahid Dr Ong Tee Chuan

Discipline: Cornea Transplant

Chairperson Dr Shamala Retnasabapathy Members Prof Dato’ Dr Veera Ramani Dr Choong Yean Yaw Dr Michael Law Sie Haur Dr Thiageswari Umapathy Dr Chandramalar Santhirathelagan Associate Prof Dr Mohtar Ibrahim

ix Discipline: Heart and Lung Transplant

Chairperson Mr Mohamed Ezani Hj Md. Taib Members Dato’ Dr David Chew Soon Ping Dr Aizai Azan Abdul Rahim Dr Abdul Rais Sanusi Dr Ashari Yunus

Discipline: Liver Transplant

Chairperson Dr Ganesalingam A/L Kanagasabai Members Dr Lim Kin Foong Dr Haniza Omar Dr Lim Chooi Bee Prof Dr Lee Way Seah

Discipline: Renal Transplant

Chairperson Dr Goh Bak Leong Members Dato’ Dr Zaki Morad Mohd Zaher Dato’ Dr (Mr) Rohan Malek Dr Fan Kin Sing Dr S Prasad Menon Dr Lily Mushahar Dr Lim Soo Kun

Discipline: Bone and Tissue Transplant

Chairperson Dr Suzina Sheikh Ab Hamid Members Dr Abdul Malik Mohamed Hussein Assoc Prof Dr Ahmad Hafiz Zulkifly Dr Thiageswari Umapathy Dr Ewe Teong Wan Dr Norimah Yusof Assoc Prof Dr Vivek Ajit Singh

Discipline: Cadaveric Organ and Tissue Donations

Chairperson Datin Dr Fadhilah Zowyah Lela Yasmin Mansor Members Dr Hooi Lai Seong Dr Omar Sulaiman Dr Muhammed Anis Bin Abdul Wahab Matron Jamaliah Kario Staff Nurse Santi A/P Krishanan

x CONTENTS

Foreword i Acknowledgements ii Participating Centres iii About the National Transplant Registry vii NTR Sponsors vii Governance Board viii Expert Panel ix Contents xi

Report Summary 1 Chapter 1: Blood and Marrow Transplantation 4 Chapter 2: Corneal Transplantation 42 Chapter 3: Heart and Lung Transplantation 71 Chapter 4: Liver Transplantation 85 Chapter 5: Renal Transplantation 99 Chapter 6: Heart Valve Transplantation 125 Chapter 7: Bone and Tissue Transplantation 136 Chapter 8: Cadaveric Organ and Tissue Donation 151

Appendix A: Data Management 180 Appendix B: Analysis Sets and Statistical Methods 184 Appendix C: Glossary 185 Appendix D: Directory of Participating Centres 188

REPORT SUMMARY

1. BLOOD AND MARROW TRANSPLANTATION

There were 181 new transplantations done in Malaysia in 2008 with 12 transplant centres.

The majority of all transplants were for malignant disorders and most of these are haematological malignancies like leukaemia and lymphoma. The main non-malignant disorders transplanted were thalassaemia and aplastic anaemia.

Mean age of new transplant patients in 2008 was 28 + 17 years; 55% were male, 42% Malay, 39% Chinese, 7% Indian and 12% others. Autologous transplants accounted for 36%. Eighty-four percent of the transplant source was from peripheral blood stem cells and 89% were from Human Leukocyte Antigen (HLA) identical donors.

In 2008 71 of transplant recipients died. Underlying disease and infection were the commonest causes of death accounting for 51% and 20% respectively.

2. CORNEAL TRANSPLANTATION

There were 46 centres which provided cornea transplantation data.

Two hundred and thirty new cornea transplantations were reported in Malaysia in 2008. Mean age of new transplant recipients in 2008 was 46 + 20 years. Of these, 62% were male. Thirty-four percent of recipients were Malay, 36% were Chinese, 18% were Indian and 12% were other races.

The primary diagnoses for cornea transplantation recipients in 2008 were pseudophakic bullous keratopathy (20%), keratoconus (16%), corneal scar (13%), microbial keratitis (8%) and corneal perforation (8%).

Forty-six percent of recipients were legally blind before their transplant surgery.

In 2008, 65% of donated corneas were from the USA, 16% from Sri Lanka and 18% from local sources. The mean age of the donors was 56 + 17 years.

The commonest cornea transplantation surgery performed was penetrating keratoplasty (82%) i.e. transplantation of a full thickness cornea tissue. Graft survival at 1 year was 77%, 63% at 3 years.

3. HEART AND LUNG TRANSPLANTATION

There were a total of 18 patients with heart transplantations reported to the Registry between 1997 and 2008; none were done in 2008. Eight grafts were functioning at the end of 2008 and all were followed up in Institut Jantung Negara.

1 The transplant patient survival rate was 63% and 44% at 1 year and 3 years respectively.

There were no lung transplants in 2008. At the end of the year there were 2 patients with lung transplants surviving with functioning graft and they were followed up at Institut Perubatan Respiratori (IPR).

4. LIVER TRANSPLANTATION

There were a total of 100 liver transplantations reported to the Registry between 1993 and 2008; 57 grafts were functioning by the end of 2008.

There were 5 new liver transplantations done in Malaysia in 2008. There were 5 follow-up centres for liver transplant recipients in 2008.

Mean age of all transplant patients was 9 + 14 years (range 3 months to 74 years); 53% were male, 51% Chinese, 39% Malay, 8% Indian, 72% were for biliary atresia. Majority were living donor liver transplantations (75%).

At the time of transplantation the main immunosuppressive drugs used were tacrolimus (77%) and steroids (63%).

Transplant patient survival rate for the cohort 1993 to 1998 was 71% at 1 year; survival rate for the cohort 1999 to 2008 was 69% at 1 year.

5. RENAL TRANSPLANTATION

There were 57 follow-up centres for renal transplant recipients in 2008. There were 88 new renal transplants in 2008, 3 per million population per year.

The number of functioning renal transplants in 2008 was 1730. The transplant prevalence rate was 62 per million population.

In 2008, the mean age for new transplant recipients was 34+15 years, 58% were male, 15% had diabetes, 4% were anti-HCV positive at the time of transplantation.

Ninety-seven percent of prevalent renal transplant recipients were on prednisolone, 69% on cyclosporine, 24% on tacrolimus, 53% mycophenolate mofetil and 28% on azathioprine.

In 2008, 48 (3%) of prevalent transplant recipients died and 32 (2%) lost their grafts. Infection, died at home and cancer were the commonest causes of death accounting for 26%, 23% and 19% respectively. Cardiovascular disease was the fourth commonest cause at 13%. Renal allograft rejection accounted for 72% of graft loss.

The overall transplant patient survival rate from 1995 to 2008 was 95%, 91%, 88% and 81% at 1 year, 3 years, 5 years and 10 years respectively, while the overall graft survival rate for these years was 91%, 85%, 80% and 66% respectively.

2 6. HEART VALVE TRANSPLANTATION

There were a total of 200 heart valve homografts reported to the Registry between 1996 and 2008; 168 grafts were functioning at the end of 2008. Ninety-three were aortic and 107 were pulmonary valves.

Mean age of all heart valve transplant patients was 11 + 10 years (range 1 month to 70 years); 50% were male, 62% Malay.

7. BONE AND TISSUE TRANSPLANTATION

In 2008, 108 bone allografts, 9 frozen tendons, 36 frozen skin and 2081 amniotic membranes were supplied by Tissue Bank, USM.

Fourteen hospitals used the bone grafts and 13 centres used the amniotic membranes. Characteristics were reported for only 21 of the recipients.

8. CADAVERIC ORGAN AND TISSUE DONATION

There were 26 donors in 2008 of which 13 were brain dead multi-organ and tissue donors and 13 were post cardiac death tissue donors. The donation rate was 0.94 donations per million population.

The mean age of the donors was 30.8 + 19.1 years, age range 2 – 71 years of age. Sixty-nine percent were male, 65% were Chinese, 23% Indian, 12% others.

Two donors carried the donor pledge card. Ten of the donors died from accidents, 15 died from medical causes. Fifty-eight percent of donations took place in MOH hospitals, 23% in private hospitals and 12% from University hospitals.

CHAPTER 1

BLOOD AND MARROW TRANSPLANTATION

Editors: Dr Alan Teh Kee Hean Prof Dr Chan Lee Lee

Expert Panel Dr Alan Teh Kee Hean (co-chairperson) Prof Dr Chan Lee Lee (co-chairperson) Dr Gan Gin Gin Dr Hishamshah Mohd Ibrahim Prof Dr S. Fadilah Abdul Wahid Dr Ong Tee Chuan

Contents

1.0 Introduction

1.1 Stock and Flow of Blood and Marrow Transplantation x Stock and Flow x Transplant Rates x Places of Transplant

1.2 Recipients’ Characteristics x Demographics x Primary Diagnosis

1.3 Transplant Practices x Graft Number x Type of Transplant x Source of Transplantation and HLA Match

1.4 Transplant Outcomes x Patient Survival

1.5 Disease-free Survival

FifthFifth Report Report of of the the BLOOD AND MARROW TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008

List1.0 INTRODUCTIONof Tables Table 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008...... 7 TableHaematopoietic 1.1.2: New Stem Transplant Cell Transplantation Rate per million (H populationSCT) activity (pmp), in Malaysia 1987-2008 continued...... 9 to Tableincrease 1.1.3: at aDistribution steady pace of which Patient wass by reflected Transplant in the Centre, increased 1987-2008 number...... 10 of transplants th Tableperformed 1.2.1: year Distribution on year. of This Patients 5 annual by Gender, report attempts1987-2008 to ...... 13provide an accurate record Tableof the 1.2.2: total numberDistribution of HSCT of Patients performed by Ethnic in 2008. Group, Overall 1987-2008 access...... 15 to HSCT remained Tablelow at 1.2.3: 6 per Distribution million population. of Patients by Age Group, 1987-2008...... 17 Table 1.2.4: Distribution of Patients by Primary Diagnosis, 1987-2008...... 19 Table1.1 STOCK 1.3.1: Distribution AND FLOW of Patients by Graft Number, 1987-2008 ...... 21 Table 1.3.2: Distribution of Patients by Transplantation Type, 1987-2008 ...... 23 TableIn 2008 1.3.3: a totalType of of 181Transplant HSCT by were Centre, perfor 1987-2008med. Two...... 25 new centres namely Hospital TablePulau 1.3.4: Pinang Source and of Hospital Stem Cells, Universiti 1987-2008 Sains...... 26 Malaysia started autologous HSCT Tablemaking 1.3.5: a total Distribution of 12 transplant of Patients centres by HLA operating Match, in 1987-2008Malaysia...... 28The Adult Transplant Tableteam 1.3.6: which Distribution operated in of HospitalPatients by Kuala Allogeneic Lumpur Donor shifted Relationship, to Hospital 1987-2008 Ampang.29 in TableDecember 1.4.1: 2006, Distribution has performed of Patie ntsthe bymost Cause number of Death, of HSCT 1987-2008 in 2008...... 30 contributing 31% of the total national transplant activity. List of Figures FigureTable 1.1.1: 1.1.1: Stock Stock and and Flow Flow of of Blood Blood and and Marrow Marrow Transplantation, Transplantation, 1987-2008 1987-2008 ...... 8 FigureYear 1.1.2: New1987 Transplant 1988 1989 Rate per1990 million 1991 population1992 1993 (pmp), 1994 1987-2008 1995 1996...... 9 1997 New transplant Figure 1.1.3: Distribution8 6 of Patients22 by5 Centre,12 1987-200821 19 ...... 1225 30 28 33 patients FigureDeaths 1.2.1: Distribution1 1 of Patients6 by6 Gender,1 1987-2008...... 142 9 5 17 11 15 FigureLost to follow- 1.2.2: Distribution of Patients by Ethnic Group, 1987-2008...... 16 0 0 0 0 0 0 0 0 0 0 0 Figureup 1.2.3: Distribution of Patients by Age Group, 1987-2008 ...... 18 FigureAlive at 1.3.1:31st Distribution of Patients by Graft Number, 1987-2008...... 22 7 12 28 27 38 57 67 87 100 117 135 FigureDecember 1.3.2: Distribution of Patients by Transplantation Type, 1987-2008...... 24 Figure 1.3.3: Type of Tran splant by Centre, 1987-2008 ...... 25 FigureYear 1.3.4: Source1998 of1999 Stem 2000Cells, 1987-20082001 2002...... 27 2003 2004 2005 2006 2007 2008 New transplant Figure 1.4.1: Patient49 Survival62 94by Year108 of Transplant,114 128 1987-2008140 148...... 32 136 149 181 patients FigureDeaths 1.4.2: Patient17 Survival16 31by Gender,47 1987-200834 56 ...... 3252 61 42 50 71 FigureLost to follow- 1.4.3: Patient Survival by Age Group, 1987-2008 ...... 33 0 0 0 0 0 0 0 0 0 0 0 Figureup 1.4.4: Patient Survival by Type of Transplant, 1987-2008 ...... 33 FigureAlive at 1.5.1:31st Disease-free Survival for Acute Myeloid Leukaemia, 1987-2008 167 213 276 337 417 489 577 664 758 857 967 December (Allogeneic vs. Autologous)...... 34 Figure 1.5.2: Disease-free Survival for Acute Lymphoblastic Leukaemia, 1987-2008 (Allogeneic)...... 35 Figure 1.5.3: Disease-free Survival for Thalassaemia, 1987-2008 (Allogeneic) ...... 35 Figure 1.5.4: Disease-free Survival for Non-Hodgkin’s Lymphoma, 1987-2008 (Allogeneic vs. Autologous)...... 36 Figure 1.5.5 Disease-free Survival for Hodgkin’s Disease, 1987-2008 (Autologous) 36 Figure 1.5.6: Disease-free Survival for Chronic Myeloid Leukaemia, 1987-2008 (Allogeneic)...... 37 Figure 1.5.7: Disease-free Survival for Aplastic Anaemia, 1987-2008 (Allogeneic) .37 Figure 1.5.8: Disease-free Survival by Age Group for Acute Myeloid Leukaemia, ...38 Figure 1.5.9: Disease-free Survival by Age Group for Acute Lymphoblastic Leukaemia, 1987-2008...... 38 Figure 1.5.10: Disease-free Survival by Age Group for Thalassaemia, 1987-2008....39 Figure 1.5.11: Disease-free Survival by Age Group for Non-Hodgkin’s Lymphoma, 1987-2008...... 39

Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1:1.5.12: Stock Disease-free and Flow Su ofrvival Blood by and Age Marrow Group forTransplantation, Hodgkin’s Disease, 1987-2008 1987-2008 ...... 40 Figure 1.5.13: Disease-free Survival by Age Group for Chronic Myeloid Leukaemia, 1987-2008...... 40New patients Alive at 31st Dec Figure1,000 1.5.14: Disease-free Survival by Age Group for Aplastic Anaemia, 1987-2008 ...... 41

800

600

400 umber of patients (n) N 200

0 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 Year

FifthFifth Report Report of of the the BLOOD AND MARROW TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008

1.0 INTRODUCTION

Haematopoietic Stem Cell Transplantation (HSCT) activity in Malaysia continued to increase at a steady pace which was reflected in the increased number of transplants th performed year on year. This 5th annual report attempts to provide an accurate record of the total number of HSCT performed in 2008. Overall access to HSCT remained low at 6 per million population.

1.1 STOCK AND FLOW

In 2008 a total of 181 HSCT were performed. Two new centres namely Hospital Pulau Pinang and Hospital Universiti Sains Malaysia started autologous HSCT making a total of 12 transplant centres operating in Malaysia. The Adult Transplant team which operated in Hospital Kuala Lumpur shifted to Hospital Ampang in December 2006, has performed the most number of HSCT in 2008 contributing 31% of the total national transplant activity.

Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 New transplant 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 17 16 31 47 34 56 52 61 42 50 71 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up st Alive at 31st 167 213 276 337 417 489 577 664 758 857 967 December

New patients Alive at 31st Dec 1,000

800

600

400 umber of patients (n) umber of patients (n) N N 200

0 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 Year

FifthFifth Report Report of of the the BLOOD AND MARROW TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table1.0 INTRODUCTION 1.1.2: New Transplant Rate per million population (pmp), 1987-2008

YearHaematopoietic Stem1987 Cell1988 Transplantation 1989 1990 1991(HSCT) 1992 activity 1993 in1994 Malaysia 1995 continued1996 1997 to Newincrease transplant at a steady pace which was reflected in the increased number of transplants 8 6 22 5 12 21 19 25 30 28 33 patientsperformed year on year. This 5th annual report attempts to provide an accurate record New transplant of the total number1 of HSCT0 performed1 0 in 2008.1 1Overall 1 access1 to HSCT1 remained1 2 rate,low pmp at 6 per million population.

Year1.1 STOCK AND1998 FLOW 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008

New transplant 49 62 94 108 114 128 140 148 136 149 181 patientsIn 2008 a total of 181 HSCT were performed. Two new centres namely Hospital NewPulau transplant Pinang and Hospital Universiti Sains Malaysia started autologous HSCT 2 3 4 5 5 5 5 6 5 5 7 rate,making pmp a total of 12 transplant centres operating in Malaysia. The Adult Transplant team which operated in Hospital Kuala Lumpur shifted to Hospital Ampang in December 2006, has performed the most number of HSCT in 2008 contributing 31% Figureof the total1.1.2: national New Transplant transplant Rate activity. per million population (pmp), 1987-2008

Table 1.1.1:7 Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Year 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 New transplant 8 6 22 5 12 21 19 25 30 28 33 patients 6 Deaths 1 1 6 6 1 2 9 5 17 11 15 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up 5 Alive at 31st 7 12 28 27 38 57 67 87 100 117 135 December 4

Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 New transplant 3 49 62 94 108 114 128 140 148 136 149 181 patients Deathsew Tranplant rate pmp 17 16 31 47 34 56 52 61 42 50 71 N Lost to follow- 2 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 167 213 276 337 417 489 577 664 758 857 967 December1

0 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 Year

Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION FigureTable 1.1.3: 1.1.1: Distribution Stock and Flow of Patient of Bloods by andTransplant Marrow Centre, Transplantation, 1987-2008 1987-2008 Year 1987 1988 1989 1990 1991 1992 1993 No. % No. % No. % No. % No. % No. % No. % KLA 0 0 0 0 N0ew patients0 0 0 0 Alive0 at 31st0 Dec0 0 0 KLP 0 0 0 0 0 0 0 0 0 0 0 0 0 0 UKM 1,0000 0 0 0 0 0 0 0 0 0 0 0 0 0 SJA 0 0 0 0 1 5 0 0 0 0 0 0 0 0 UMA 0 0 0 0 0 0 0 0 0 0 0 0 1 5 UMP 8008 100 6 100 21 95 5 100 12 100 21 100 18 95 GMC 0 0 0 0 0 0 0 0 0 0 0 0 0 0 LWE 0 0 0 0 0 0 0 0 0 0 0 0 0 0 SJP 0 0 0 0 0 0 0 0 0 0 0 0 0 0 HUSM 6000 0 0 0 0 0 0 0 0 0 0 0 0 0 ASH 0 0 0 0 0 0 0 0 0 0 0 0 0 0 HA 0 0 0 0 0 0 0 0 0 0 0 0 0 0 HPP 4000 0 0 0 0 0 0 0 0 0 0 0 0 0 Others 0 0 0 0 0 0 0 0 0 0 0 0 0 0 umber of patients (n)

TOTALN 8 100 6 100 22 100 5 100 12 100 21 100 19 100 200 Year 1994 1995 1996 1997 1998 1999 2000 No. % No. % No. % No. % No. % No. % No. % KLA 0 0 0 0 0 0 0 0 0 0 6 10 15 16 KLP 0 4 16 10 33 10 36 9 27 16 33 19 31 16 17 UKM 0 870 88 890 90 910 92 930 940 95 960 97 980 99 000 01 020 03 042 05 063 07 908 10 SJA 0 0 0 0 0 0 0 Year0 0 0 5 8 19 20 UMA 4 16 7 23 6 21 9 27 15 30 11 18 13 14 UMP 17 68 13 43 11 39 15 46 18 37 19 31 22 23 GMC 0 0 0 0 0 0 0 0 0 0 0 0 0 0 LWE 0 0 0 0 0 0 0 0 0 0 0 0 0 0 SJP 0 0 0 0 1 4 0 0 0 0 0 0 0 0 HUSM 0 0 0 0 0 0 0 0 0 0 0 0 0 0 ASH 0 0 0 0 0 0 0 0 0 0 0 0 0 0 HA 0 0 0 0 0 0 0 0 0 0 0 0 0 0 HPP 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Others 0 0 0 0 0 0 0 0 0 0 0 0 0 0 TOTAL 25 100 30 100 28 100 33 100 49 100 62 100 94 100

Year 2001 2002 2003 2004 2005 2006 2007 No. % No. % No. % No. % No. % No. % No. % KLA 20 19 28 25 36 28 42 30 45 30 31 23 0 0 KLP 18 17 20 18 19 15 22 16 21 14 26 19 26 17 UKM 12 11 9 8 11 9 14 10 17 11 9 7 21 14 SJA 17 16 20 18 23 18 21 15 23 16 22 16 21 14 UMA 19 18 16 14 10 8 10 7 14 9 9 7 12 8 UMP 22 20 20 18 20 16 16 11 13 9 18 13 16 11 GMC 0 0 0 0 0 0 2 1 2 1 4 3 2 1 LWE 0 0 0 0 0 0 6 4 1 1 2 1 1 1 SJP 0 0 1 1 9 7 6 4 12 8 6 4 5 3 HUSM 0 0 0 0 0 0 0 0 0 0 0 0 0 0 ASH 0 0 0 0 0 0 0 0 0 0 1 1 1 1 HA 0 0 0 0 0 0 0 0 0 0 8 6 44 30 HPP 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Others 0 0 0 0 0 0 1 1 0 0 0 0 0 0 TOTAL 108 100 114 100 128 100 140 100 148 100 136 100 149 100

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Year1.0 INTRODUCTION2008 Total No. % No. % KLAHaematopoietic 0 Stem0 Cell223 Transplantation 15 (HSCT) activity in Malaysia continued to KLPincrease at 29a steady16 pace265 which 17was reflected in the increased number of transplants UKMperformed year24 on13 year. 128 This 5th8 annual report attempts to provide an accurate record SJAof the total25 number 14 of HSCT197 performed13 in 2008. Overall access to HSCT remained UMA 17 9 173 11 low at 6 per million population. UMP 16 9 347 23 GMC 1 1 11 1 LWE1.1 STOCK0 AND0 FLOW 10 1 SJP 4 2 44 3 HUSMIn 2008 a total6 of3 181 HSCT6 were0 perfor med. Two new centres namely Hospital ASHPulau Pinang0 and0 Hospital2 Universiti0 Sa ins Malaysia starte d autologous HSCT HAmaking a total57 of 3112 transplant109 centres7 operating in Malaysia. The Adult Transplant HPPteam which2 operated1 in 2 Hospital0 Kuala Lumpur shifted to Hospital Ampang in OthersDecember 2006,0 has0 performed1 the0 most number of HSCT in 2008 contributing 31% TOTALof the total181 national 100 transplant 1518 activity.100 *Others include Royal Perth Australia Hospital

KLATable 1.1.1: StockHospital and Kuala Flow Lumpur, of Blood (Adult) and Marrow Transplantation, 1987-2008 YearKLP Hospital1987 Kuala1988 Lumpur, 1989 Institute1990 Paediatrics 1991 (Paed)1992 1993 1994 1995 1996 1997 UKMNew transplant Pusat Perubatan Universiti Kebangsaan Malaysia 8 6 22 5 12 21 19 25 30 28 33 SJApatients Sime Darby Medical Centre, Subang Jaya (Adult) UMA University of Malaya Medical Centre (Adult) Deaths 1 1 6 6 1 2 9 5 17 11 15 UMP University of Malaya Medical Centre (Paed) Lost to follow- GMC Gleneagles0 Medical0 Centre,0 Penang0 0 0 0 0 0 0 0 LWEup Lam Wah Ee Hospital, Penang Alive at 31st SJP Sime7 Darby 12Medical 28 Centre, Subang27 Jaya38 (Paed)57 67 87 100 117 135 HUSMDecember Hospital Universiti Sains Malaysia ASH Ampang Puteri Specialist Hospital HAYear Hospital1998 Ampang1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 HPPNew transplant Hospital Pulau Pinang 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 17 16 31 47 34 56 52 61 42 50 71 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 167 213 276 337 417 489 577 664 758 857 967 December

117

KLA KLPNew patientsUKM SJA Alive at 31stUMA Dec UMP 1,000140

120 800 100

80600

60 400 umber of patients (n) umber of patients (n) 40 N N 200 20

0 0 87 8788 8889 8990 9091 9192 92 93 93 94 94 95 95 96 96 97 97 98 98 99 99 00 00 01 01 02 03 04 04 05 05 0606 0707 0808 YearYear

GMC LWE SJP HUSM ASH HA HPP Others

100

umber of patients (n) 30 N 20

0 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 Year

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1.21.0 RECIPIENTS’ INTRODUCTION CHARACTERISTICS

OutHaematopoietic of the 181 HSCT, Stem Cell the Transplantationmale:female ratio (H wasSCT) 55:45. activity The in ethnicMalaysia breakdown continued was to 42%,increase 39%, at 7%,a steady 11% paceand 1%which for wasMalay, reflected Chines ine, theIndian, increased Bumiputra number East of Malaysianstransplants th andperformed Others respectively.year on year. Patients This 5 agedannual younge reportr attemptsthan 20 years to provide formed an 37%accurate of patients record transplantedof the total number while those of HSCT aged performed greater than in 2008. 60 years Overall was onlyaccess 2%. to HSCT The commonest remained indicationslow at 6 per for million HSCT population. were acute leukaemia, lymphoma and hypoplastic anaemia.

Table1.1 STOCK 1.2.1: Distribution AND FLOW of Patients by Gender, 1987-2008 Year 1987 1988 1989 1990 1991 1992 1993 1994 GenderIn 2008 No. a total% ofNo. 181% HSCTNo. were% No. perfor %med.No. Two% newNo. centres% No. namely % HospitalNo. % MalePulau Pinang7 88 and4 Hospital67 12 Universiti55 3 Sa60ins 7 Malaysia 58 13 starte 62d autologous13 68 16 HSCT 64 Femalemaking a1 total13 of 122 transplant33 10 centres45 2 operating40 5 in Malaysia.42 8 38 The 6Adult 32 Transplant 9 36 team which operated in Hospital Kuala Lumpur shifted to Hospital Ampang in TOTAL 8 100 6 100 22 100 5 100 12 100 21 100 19 100 25 100 December 2006, has performed the most number of HSCT in 2008 contributing 31% of the total national transplant activity. Year 1995 1996 1997 1998 1999 2000 2001 2002

TableGender 1.1.1:No. Stock% No. and Flow% No. of Blood% No.and Marrow% No. Transplantation,% No. % 1987-2008No. % No. % YearMale 11 37 198715 198854 181989 55 199033 199167 361992 58 199354 199457 199566 611996 62 199754 FemaleNew transplant 19 63 13 46 15 45 16 33 26 42 40 43 42 39 52 46 8 6 22 5 12 21 19 25 30 28 33 TOTALpatients 30 100 28 100 33 100 49 100 62 100 94 100 108 100 114 100 Deaths 1 1 6 6 1 2 9 5 17 11 15 Lost to follow- Year 2003 0 2004 0 20050 0 2006 0 20070 0 20080 0Total 0 0 up

GenderAlive at 31No.st % No. % No. % No. % No. % No. % No. % 7 12 28 27 38 57 67 87 100 117 135 MaleDecember 71 55 84 60 71 48 80 59 90 60 99 55 865 57 Female 57 45 56 40 77 52 56 41 59 40 82 45 653 43 TOTALYear 128 100 1998140 1999100 1482000100 2001136 2002100 1492003100 2004181 2005100 15182006 1002007 2008 New transplant 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 17 16 31 47 34 56 52 61 42 50 71 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 167 213 276 337 417 489 577 664 758 857 967 December

137

New patientsMale AliveFemale at 31st Dec 1,000100 90

80080 70

60060 50

40040

umber of patients (n) 30 N Percentage of patients (%) patients of Percentage 20020 10

00 87 88 89 90 91 92 9393 94 94 95 95 96 96 97 97 98 98 99 99 00 00 01 01 02 02 03 03 04 04 0505 0606 0707 0808 Year

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Table1.0 INTRODUCTION 1.2.2: Distribution of Patients by Ethnic Group, 1987-2008 Year 1987 1988 1989 1990 1991 1992 1993 1994 RaceHaematopoieticNo. % StemNo. Cell% TransplantationNo. % No. %(HSCT)No. activity% No. in %MalaysiaNo. continued% No. %to Malayincrease at2 a steady25 4 pace67 which13 was59 reflected2 40 in4 the 33increased 4 19number 3 of16 transplants 9 36 th Chineseperformed 5 year63 on 2year. 33 This8 5 36annual 3 report60 attempts7 58 to10 provide 48 an10 accurate53 12record 48 Indianof the total1 number13 0 of HSCT0 0 performed0 0 in 02008. 1 Overall8 4 access19 to 1HSCT 5 remained0 0 Bumiputra low at 6 per0 million0 0 population.0 1 5 0 0 0 0 2 10 3 16 4 16 Sabah Bumiputra 1.1 STOCK0 AND0 0FLOW 0 0 0 0 0 0 0 0 0 2 10 0 0 Sarawak

Others 0 0 0 0 0 0 0 0 0 0 1 5 0 0 0 0 In 2008 a total of 181 HSCT were performed. Two new centres namely Hospital TOTAL 8 100 6 100 22 100 5 100 12 100 21 100 19 100 25 100 Pulau Pinang and Hospital Universiti Sains Malaysia started autologous HSCT

Yearmaking a total1995 of 121996 transplant1997 centres operating1998 1999in Malaysia.2000 The Adult2001 Transplant2002 Raceteam whichNo. operated% No. in% HospitalNo. % KualaNo. % LumpurNo. shifted% No. to % HospitalNo. Ampang% No. % in MalayDecember 7 2006,23 has8 performed29 9 the27 most20 number41 31 of HSCT50 33 in 200835 contributing47 44 37 31%32 Chineseof the total14 national47 11 transplant 39 20 activity.61 24 49 26 42 48 51 48 44 65 57 Indian 3 10 6 21 0 0 4 8 4 6 7 8 8 7 8 7 BumiputraTable 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 1 3 0 0 1 3 0 0 0 0 3 3 1 1 1 1 YearSabah 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 BumiputraNew transplant 0 0 8 3 611 022 0 5 0 120 0 21 0 19 0 250 130 1 28 1 331 Sarawakpatients OthersDeaths 5 17 1 0 10 3 6 9 6 1 12 1 2 2 9 3 53 317 3 11 2 152 Lost to follow- TOTAL 30 100 0 28 1000 330 100 0 49 1000 62 0 100 0 94 1000 1080 100 0 114 0100 up Alive at 31st Year 2003 7 200412 282005 27 200638 572007 67 200887 100Total 117 135 December Race No. % No. % No. % No. % No. % No. % No. %

Malay 46 36 51 37 53 36 61 45 59 40 77 42 580 38 Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 Chinese 65 51 63 45 69 47 50 37 59 40 71 39 690 45 New transplant 49 62 94 108 114 128 140 148 136 149 181 Indianpatients 6 5 9 6 14 10 11 8 18 12 12 7 117 8 Bumiputra Deaths 4 3 17 9 166 531 3 47 7 345 6 56 4 52 14 618 6242 4 50 71 Sabah Lost to follow- Bumiputra 0 0 0 0 0 0 0 0 0 0 0 up 4 3 7 5 5 3 2 1 1 1 5 3 31 2 SarawakAlive at 31st 167 213 276 337 417 489 577 664 758 857 967 OthersDecember 3 2 1 1 2 1 5 4 6 4 2 1 38 3 TOTAL 128 100 140 100 148 100 136 100 149 100 181 100 1518 100

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Figure 1.2.2: Distribution of Patients by Ethnic Group, 1987-2008 New patients Alive at 31st Dec Malay Chinese Indian 1,000 Bumiputera Sabah Bumiputera Sarawak Others

100

80090

80 60070 60

40050

umber of patients (n) 40 N 30 200

Percentage of patients (%) patients of Percentage 20

10 0 0 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 87 88 89 90 91 92 93 94 95 96 97Year 98 99 00 01 02 03 04 05 06 07 08 Year

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Table1.0 INTRODUCTION 1.2.3: Distribution of Patients by Age Group, 1987-2008 Year 1987 1988 1989 1990 1991 1992 1993 1994 Age HaematopoieticNo. % StemNo. Cell% TransplantationNo. % No. % (H SCT)No. %activity No. in% Malaysia No. %continued No. % to groupincrease at a steady pace which was reflected in the increased number of transplants 0-9 4 50 4 67 17 77 5 100 10 83 15 71 9 47 11 44 performed year on year. This 5th annual report attempts to provide an accurate record 10-19 4 50 2 33 5 23 0 0 2 17 6 29 10 53 11 44 20-39of the total0 number0 0 of HSCT0 0 performed0 0 in0 2008.0 Overall0 0 access0 to0 HSCT0 remained3 12 40-59low at 6 per0 million0 0 population.0 0 0 0 0 0 0 0 0 0 0 0 0 60 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 TOTAL1.1 STOCK 8 AND100 6FLOW100 22 100 5 100 12 100 21 100 19 100 25 100 Mean 9 7 8 6 6 7 9 11 SDIn 2008 a total4 of 1813 HSCT 3 were perfor3 med. Two4 new 4 centres namely5 Hospital7 MedianPulau Pinang9 and Hospital7.5 Universiti8 6 Sains Malaysia6 starte6 d autologous10 HSCT11 Minimummaking a total2 of 12 2transplant 1 centres operating2 in1 Malaysia.1 The Adult1 Transplant1 Maximumteam which15 operated10 in Hospital13 Kuala9 Lumpur13 shifted14 to Hospital17 Ampang29 in December 2006, has performed the most number of HSCT in 2008 contributing 31% Yearof the total1995 national transplant1996 1997 activity. 1998 1999 2000 2001 2002 Age No. % No. % No. % No. % No. % No. % No. % No. % group 0-9Table 1.1.1:12 Stock40 and13 Flow46 19of Blood58 and21 Marrow43 28 Transplantation,45 27 29 231987-2008 21 30 26 Year 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 10-19 13 43 12 43 8 24 16 33 15 24 27 29 28 26 25 22 New transplant 20-39 4 13 8 3 116 522 15 5 12 2412 12 21 20 1919 2025 40 30 37 2836 3332 patients 40-59 1 3 0 0 1 3 0 0 7 11 20 21 16 15 23 20 Deaths 1 1 6 6 1 2 9 5 17 11 15 Lost60 to follow-0 0 0 0 0 0 0 0 0 0 1 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 TOTALup 30 100 28 100 33 100 49 100 62 100 94 100 108 100 114 100 MeanAlive at 31st 13 11 12 13 17 23 23 23 7 12 28 27 38 57 67 87 100 117 135 SDDecember 9 9 12 10 15 17 16 16 Median 11 11 6 10 11 18 22 21.5 MinimumYear 3 1998 11999 20001 20015 months2002 20031 2004 1 2005 12006 month 2007 12008 New transplant Max 41 49 37 62 9445 108 39 114 12857 140 61 148 13664 149 55181 patients YearDeaths 2003 17 200416 312005 47 200634 200756 52 2008 61 Total42 50 71 AgeLost to follow- No. % 0 No. %.0 No.0 % 0No . %0 No. 0 % 0No. %0 No. 0 % 0 0 groupup 0-9Alive at 31st42 33 26 19 29 20 40 29 38 26 25 14 448 30 167 213 276 337 417 489 577 664 758 857 967 10-19December 18 14 41 29 32 22 29 21 22 15 42 23 368 24 20-39 47 37 52 37 50 34 38 28 35 23 63 35 419 28 40-59 21 16 19 14 36 24 25 18 43 29 47 26 259 17 60 0 0 2 1 1 1 4 3 11 7 4 2 24 2 TOTAL 128 100 140 100 148 100 136 100 149 100 181 100 1518 100 Mean 22 23 26 24 29 28 22 SD 15 15 16 18 20 17 17 Median 22.5 20 23.5 19 28 25 18 Minimum 5 months 1 1 1 1 2 1 month Maximum 52 70 66 69 68 66 70

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Figure 1.2.3: Distribution of Patients by Age Group, 1987-2008 New patients Alive at 31st Dec 0-9 years 10-19 years 20-39 years 1,000 40-59 years 60 years

100

80090

80 60070 60

40050

umber of patients (n) 40 N 30 200

Percentage of patients (%) patients of Percentage 20

10 0 0 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 87 88 89 90 91 92 93 94 95 96 97Year 98 99 00 01 02 03 04 05 06 07 08 Year

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Table1.0 INTRODUCTION 1.2.4: Distribution of Patients by Primary Diagnosis, 1987-2008 Year 1993 1994 1987 1988 1989 1990 1991 1992 Haematopoietic Stem Cell Transplantation (HSCT) activity in Malaysia continued to Diagnosisincrease at a steadyNo. %pace No. which% wasNo. reflected% No .in %the increasedNo. % numberNo. % ofNo. transplants % No. % Acuteperformed leukaemia year 5on year.63 This4 675th annual8 36 report 2 attempts40 1 to provide8 4 an19 accurate 6 32record 8 32 Chronicof the leukaemia total number 0 of0 HSCT0 performed0 1 5 in 2008.1 20 Overall 1 access8 4 to 19HSCT 2 remained11 4 16 Hypoplastic low at 6 per million2 25population. 0 0 4 18 0 0 4 33 5 24 4 21 5 20 anaemia Erythrocytic 0 0 0 0 1 5 1 20 1 8 1 5 0 0 0 0 disorders1.1 STOCK AND FLOW Lymphoma 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 SolidIn 2008tumors a total 0 of 1810 HSCT0 0 were0 perfor0 med.0 Two0 0 new0 centres3 namely14 1 Hospital5 1 4 MyelodysplasiaPulau Pinang and0 Hospital0 0 Universiti0 0 0 Sains0 Malaysia0 0 starte0 d0 autologous0 1 HSCT5 2 8 Haemoglobinopathymaking a total of1 1213 transplant 2 33 centres7 operating32 1 20in Malaysia.4 33 The4 Adult19 2Transplant 11 5 20 Multipleteam myeloma which operated0 0 in 0 Hospital0 0 Kuala0 Lumpur0 0 shifted0 0 to Hospital0 0 Ampang0 0 in0 0 OthersDecember 2006,0 has 0performed 0 0 the1 most 5 number0 0of HSCT1 8in 20080 contributing0 3 16 31%0 0 TOTALof the total national8 100transplant6 100 activity.22 100 5 100 12 100 21 100 19 100 25 100

YearTable 1.1.1: Stock1995 and Flow1996 of Blood1997 and Marrow1998 Transplantation,1999 2000 1987-20082001 2002 Year 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 DiagnosisNew transplant No. % No. % No. % No. % No. % No. % No. % No. % 8 6 22 5 12 21 19 25 30 28 33 Acutepatients leukaemia 10 33 13 46 11 33 23 47 28 45 37 39 48 44 48 42 ChronicDeaths leukaemia 5 1 17 1 5 618 6 6 18 1 7 142 7 9 11 5 13 1417 1811 17 1519 17 HypoplasticLost to follow- 8 0 27 0 4 014 5 0 15 0 4 08 5 0 8 0 11 120 7 0 6 0 4 4 anaemiaup st ErythrocyticAlive at 31 0 7 0 12 1 284 027 0 38 0 570 0 67 0 87 0 1000 0117 0 1351 1 disordersDecember Lymphoma 0 0 0 0 2 6 5 10 6 10 19 20 23 21 20 18 Year Solid tumors 19981 3 19990 20000 20011 3 20022 20034 20045 8 20052 20062 02007 0 20083 3 New transplant Myelodysplasia 049 0 62 0 940 0108 0 1141 1282 0140 0 1481 1361 4149 4 1814 4 patients Haemoglobinopathy 5 17 5 18 6 18 2 4 4 6 7 7 4 4 8 7 Deaths 17 16 31 47 34 56 52 61 42 50 71 MultipleLost to myelomafollow- 0 0 0 0 0 0 0 0 3 5 1 1 1 1 4 4 0 0 0 0 0 0 0 0 0 0 0 Othersup 1 3 0 0 2 6 5 10 4 6 3 3 3 3 3 3 st TOTALAlive at 31 30 100 28 100 33 100 49 100 62 100 94 100 108 100 114 100 167 213 276 337 417 489 577 664 758 857 967 December Year 2003 2004 2005 2006 2007 2008 Total

Diagnosis No. % No. % No. % No. % No. % No. % No. %

Acute leukaemia 42 33 46 33 55 37 43 32 54 36 62 34 558 37 Chronic leukaemia 18 14 22 16 13 9 9 7 7 5 5 3 167 11 Hypoplastic 5 4 12 9 5 3 14 10 13 9 17 9 138 9 anaemia Erythrocytic 2 2 0 0 0 0 0 0 0 0 1 1 9 1 disorders

Lymphoma 28 22 36 26 34 23 32 24 35 23 43 24 283 19 Solid tumors 2 2 0 0 2 1 5 4 5 3 1 1 34 2 Myelodysplasia 3 2 6 4 4 3 4 3 1 1 5 3 36 2 Haemoglobinopathy 17 13 9 6 16 11 11 8 13 9 11 6 144 9 Multiple myeloma 5 4 3 2 8 5 10 7 16 11 16 9 67 4 Others 6 5 6 4 11 7 8 6 5 3 20 11 82 5 TOTAL 128 100 140 100 148 100 136 100 149 100 181 100 1518 100

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Diagnosis Categorisation 1 Acute leukaemia, unclassified 2 Acute undifferentiated leukaemiaNew patients Alive at 31st Dec 3 Acute Lymphocytic Leukaemia (ALL) 1,000 Acute leukaemia 4 Acute Myelogenous Leukaemia (AML) denovo 5 AML post-chemotherapy 6 AML post-MDS 800 7 Chronic lymphocytic leukaemia Chronic leukaemia 8 Chronic myeloid leukaemia 9 Aplastic anaemia 600 Hypoplastic anaemia 10 Fanconi's anaemia 11 Diamond-Blackfan anaemia Erythrocytic Disorders 12 Congenital Dyserythropoeitic Anaemia (CDA) 400 13 Hodgkin's lymphoma 14 umber of patients (n) Non-Hodgkin's lymphoma, Aggressive Lymphoma N 15 Non-Hodgkin's lymphoma, Indolent 16 Carcinoma,200 breast 17 Carcinoma, ovary 18 Germ Cell Tumour (GCT)-testicular 0 19 GCT-primary87 88 non-testis 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 20 Ewing's sarcoma Year 21 Glioma Solid tumors

22 Hepatoblastoma

23 Neuroblastoma

24 Rhabdomyosarcoma 25 Soft tissue sarcoma (non-RMS) 26 Wilms tumour 27 Primitive Neuroectodermal Tumour (NET) 28 Juvenile Myelomonocytic leukaemia 29 Myelodyplastic syndrome (MDS) Myelodysplasia 30 Myelofibrosis 31 Thalassaemia major Haemoglobinopathy 32 Sickle Cell Anaemia 33 Multiple myeloma Multiple myeloma 34 Haemophagocytic Lymphohistiocytosis Syndrome 35 Congenital Immunodeficiencies Others 36 Osteopetrosis 37 Others

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1.31.0TRANSPLANT INTRODUCTION PRACTICES

SecondHaematopoietic grafts constituted Stem Cell 8% Transplantation of the 181 tr ansplants(HSCT) activity performed. in Malaysia The majority continued of the to graftsincrease were at allogeneica steady pace (64%). which The was commonest reflected instem the ce increasedll source numberwas peripheral of transplants blood th stemperformed cells (PBSC) year on whichyear. Thisformed 5 annual84% of report HSCT attempts done. Bone to provide marrow an andaccurate cord recordblood stemof the cells total contributed number of 11% HSCT and performed 5% to the intotal, 2008. respectively. Overall access to HSCT remained low at 6 per million population. The donors for the 115 allogeneic HSCT were HLA-identical sibling donors in 102 cases.1.1 STOCK There were AND 13 FLOW unrelated donors who were 1-antigen mismatched in 7 cases and 2-antigen mismatched in 6 cases. The unrelated donor transplantations used cord bloodIn 2008 for a8 totaland PBSC of 181 for HSCT 5 patients. were The perfor recoursemed. Two to unrelated new centres donors namely remained Hospital low atPulau 11% Pinangin Malaysia and compar Hospitaled Universitiwith Japan, Sa Singaporeins Malaysia and Hong starte dKong autologous where 40-60% HSCT ofmaking HSCT a used total unrelated of 12 transplant donors. centres operating in Malaysia. The Adult Transplant team which operated in Hospital Kuala Lumpur shifted to Hospital Ampang in TableDecember 1.3.1: 2006, Distribution has performed of Patie ntsthe bymost Graft number Number, of HSCT 1987-2008 in 2008 contributing 31% Yearof the total1987 national 1988transplant 1989 activity. 1990 1991 1992 1993 1994 Graft % No. % No. % No. % No. % No. % No. % No. % No. Tablenumber 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Year1 8 100 1987 6 1988 100 191989 86 1990 4 1991 80 91992 75 1993 19 1994 90 1995 18 951996 24 1997 96 2New transplant 0 0 0 0 2 9 1 20 3 25 2 10 1 5 1 4 8 6 22 5 12 21 19 25 30 28 33 3patients 0 0 0 0 1 5 0 0 0 0 0 0 0 0 0 0 TOTALDeaths 8 100 1 6 1001 22 6 100 6 5 1001 12 2 100 9 21 1005 1917 100 11 25 15 100 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 Yearup 1995 1996 1997 1998 1999 2000 2001 2002 Alive at 31st Graft 7 12 28 27 38 57 67 87 100 117 135 numberDecember No. % No. % No. % No. % No. % No. % No. % No. %

1 29 97 28 100 31 94 47 96 61 98 91 97 103 95 113 99 Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2 1 3 0 0 1 3 1 2 1 2 3 3 5 5 1 1 New transplant 3 0 0 49 0 62 0 1 94 3 108 1 114 2 0128 0 140 0 148 0 136 0 0 149 0 181 0 patients TOTALDeaths 30 100 17 28 10016 3331 100 47 49 10034 62 56 100 52 94 10061 10842 100 50 114 71 100 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 Yearup 2003 2004 2005 2006 2007 2008 Total GraftAlive at 31st No. % 167 No. 213 % No.276 % 337 No. 417% No.489 % 577 No. 664 % No.758 %857 967 numberDecember 1 125 98 135 98 125 98 123 97 121 98 156 92 1395 96 2 3 2 3 2 2 2 2 2 2 2 13 8 48 4 3 0 0 0 0 0 0 1 1 0 0 0 0 4 0 TOTAL 128 100 138 100 127 100 126 100 123 100 169 100 1447 100 Note: Missing in graft number = 71 patients (5%)

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Figure 1.3.1: Distribution of Patients by Graft Number, 1987-2008 New patients Alive at 31st Dec Graft number 1 Graft number 2 Graft number 3 1,000 100

800 80

600 60

400 40 umber of patients (n) N

Percentage of patients (%) patients of Percentage 200 20

0 0 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 87 88 89 90 91 92 93 94 95 96 97Year 98 99 00 01 02 03 04 05 06 07 08 Year

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Table1.0 INTRODUCTION 1.3.2: Distribution of Patients by Transplantation Type, 1987-2008 Year 1987 1988 1989 1990 1991 1992 1993 1994 TypeHaematopoietic of Stem Cell Transplantation (HSCT) activity in Malaysia continued to No. % No. % No. % No. % No. % No. % No. % No. % transplantincrease at a steady pace which was reflected in the increased number of transplants Allogeneic + th performed year8 100on year.6 This100 521 annual95 5report 100 attempts12 100 to 20provide 95 an18 accurate 95 24record 96 Syngeneic of the total number of HSCT performed in 2008. Overall access to HSCT remained Autologous 0 0 0 0 1 5 0 0 0 0 1 5 1 5 1 4 TOTALlow at 6 per 8million100 population.6 100 22 100 5 100 12 100 21 100 19 100 25 100

Year1.1 STOCK AND1995 FLOW1996 1997 1998 1999 2000 2001 2002 Type of No. % No. % No. % No. % No. % No. % No. % No. % transplantIn 2008 a total of 181 HSCT were performed. Two new centres namely Hospital Allogeneic + Pulau Pinang29 and97 Hospital26 93 Universiti27 82 32 Sains65 Malaysia44 71 starte56 60d autologous75 69 75 HSCT 66 Syngeneicmaking a total of 12 transplant centres operating in Malaysia. The Adult Transplant Autologousteam which 1 operated3 2 in 7 Hospital 6 18 Kuala 17 Lumpur35 18 shifted29 38 to 40 Hospital 33 Ampang31 39 34 in TOTALDecember 2006,30 100 has 28performed100 33 the100 most 49 number100 62of HSCT100 94 in 2008100 contributing108 100 114 31%100 of the total national transplant activity. Year 2003 2004 2005 2006 2007 2008 Total

Type of No. % No. % No. % No. % No. % No. % No. % transplantTable 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 AllogeneicYear + 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 83 65 90 64 91 61 87 64 75 50 115 64 1019 67 SyngeneicNew transplant 8 6 22 5 12 21 19 25 30 28 33 Autologouspatients 45 35 50 36 57 39 49 36 74 50 66 36 499 33 TOTALDeaths 128 1001 140 1 100 6148 1006 136 1100 1492 1009 181 5100 151817 10011 15 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 7 12 28 27 38 57 67 87 100 117 135 December

Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 New transplant 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 17 16 31 47 34 56 52 61 42 50 71 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up st Alive at 31 167 213 276 337 417 489 577 664 758 857 967 December

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Figure 1.3.2: Distribution of Patients by Transplantation Type, 1987-2008 New patients Alive at 31st Dec Allogeneic+Syngeneic Autologous 1,000 180

160 800 140

600120

100

40080 umber of patients (n)

N 60 umber of patients (n) N 200 40

20 0 0 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 87 88 89 90 91 92 93 94 95 96Year 97 98 99 00 01 02 03 04 05 06 07 08 Year

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Table1.0 INTRODUCTION 1.3.3: Type of Transplant by Centre, 1987-2008 Type of transplant Allogeneic + Syngeneic Autologous TOTAL CentreHaematopoietic Stem CellNo. Transplantation % (HSCT)No. activity% in MalaysiaNo. continued% to KLAincrease at a steady pace which112 was reflected11 in111 the increased22 number223 of transplants15 KLPperformed year on year. This236 5th annual23 report attempts29 to provide6 an265 accurate record17 UKMof the total number of HSCT69 performed7 in 2008.59 Overall access12 to HSCT128 remained8 SJA 75 7 122 24 197 13 UMAlow at 6 per million population.119 12 54 11 173 11 UMP 307 30 40 8 347 23 GMC1.1 STOCK AND FLOW 5 0 6 1 11 1 LWE 9 1 1 0 10 1 SJPIn 2008 a total of 181 HSCT38 were perfor4 med. 6 Two new 1 centres namely44 Hospital3 HUSMPulau Pinang and Hospital0 Universiti0 Sains Malaysia6 starte1 d autologous6 HSCT0 ASHmaking a total of 12 transplant1 centres0 operating 1in Malaysia.0 The Adult2 Transplant0 HA 47 5 62 12 109 7 HPPteam which operated in Hospital0 Kuala0 Lumpur2 shifted 0 to Hospital2 Ampang0 in OtherDecember 2006, has performed1 the most0 number 0of HSCT in0 2008 contributing1 031% TOTALof the total national transplant1019 activity.100 499 100 1518 100

FigureTable 1.1.1: 1.3.3: Stock Type andof Tran Flowsplant of Blood by Centre, and Marrow 1987-2008 Transplantation, 1987-2008 Year 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 New transplant 8 6 22 5 12 21 19 25 30 28 33 patients Allogeneic+Syngeneic Autologous Deaths 1 1 6 6 1 2 9 5 17 11 15 Lost to follow-300 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 7 12 28 27 38 57 67 87 100 117 135 December250

Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 200 New transplant 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 150 17 16 31 47 34 56 52 61 42 50 71 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st umber of patients (n) 100 167 213 276 337 417 489 577 664 758 857 967

DecemberN

0 KLA KLP UKM SJA UMA UMP GMC LWE SJP HUSM ASH HA HPP Other Centre

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Table 1.3.4: Source of Stem Cells, 1987-2008 Year 1987 1988 1989 1990 1991 1992 1993 1994 Transplant New patients Alive at 31st Dec No. % No. % No. % No. % No. % No. % No. % No. % source Marrow1,000 8 100 6 100 22 100 5 100 12 100 21 100 19 100 25 100 PBSC / Marrow + PBSC 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Cord blood800 / Marrow + cord 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 TOTAL 8 100 6 100 22 100 5 100 12 100 21 100 19 100 25 100

600 Year 1995 1996 1997 1998 1999 2000 2001 2002 Transplant No. % No. % No. % No. % No. % No. % No. % No. % source Marrow 400 30 100 28 100 24 73 25 51 37 60 31 33 30 28 31 27

PBSC umber of patients (n) / Marrow + 0 0 0 0 7 21 23 47 23 37 57 61 74 69 79 69 PBSC N Cord blood200 / Marrow + cord 0 0 0 0 2 6 1 2 2 3 6 6 4 4 4 4 TOTAL 30 100 28 100 33 100 49 100 62 100 94 100 108 100 114 100

0 Year 87 200388 89 90 200491 92 932005 94 95 962006 97 98 992007 00 01 022008 03 04 05Total 06 07 08 Transplant No. % No. % No. % No. % No. % No. % No. % source Year Marrow 44 34 30 21 25 17 17 13 23 15 20 11 513 34 PBSC / Marrow + PBSC 79 62 101 72 116 78 109 80 119 80 152 84 939 62 Cord blood / Marrow + cord 5 4 9 6 7 5 10 7 7 5 9 5 66 4 TOTAL 128 100 140 100 148 100 136 100 149 100 181 100 1518 100

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Figure1.0 INTRODUCTION 1.3.4: Source of Stem Cells, 1987-2008

Haematopoietic Stem Cell Transplantation (HSCT) activity in Malaysia continued to Marrow PBSC/ Marrow+ PBSC Cord blood/ Marrow + cord increase at a steady pace which was reflected in the increased number of transplants th performed180 year on year. This 5 annual report attempts to provide an accurate record of the total number of HSCT performed in 2008. Overall access to HSCT remained low160 at 6 per million population.

1.1140STOCK AND FLOW

120 In 2008 a total of 181 HSCT were performed. Two new centres namely Hospital Pulau100 Pinang and Hospital Universiti Sains Malaysia started autologous HSCT making a total of 12 transplant centres operating in Malaysia. The Adult Transplant team80 which operated in Hospital Kuala Lumpur shifted to Hospital Ampang in December 2006, has performed the most number of HSCT in 2008 contributing 31% of theumber of patients (n) 60 total national transplant activity. N 40 Table 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Year 20 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 New transplant 8 6 22 5 12 21 19 25 30 28 33 patients0 Deaths 87 88 189 90 191 92 693 946 95 96 971 98 992 00 019 02 035 04 0517 06 0711 08 15 Lost to follow- Year 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 7 12 28 27 38 57 67 87 100 117 135 December

Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 New transplant 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 17 16 31 47 34 56 52 61 42 50 71 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 167 213 276 337 417 489 577 664 758 857 967 December

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Table 1.3.5: Distribution of Patients by HLA Match, 1987-2008 Year 1987 1988 1989 1990 1991 HLA Match No. % No.New patients% No. % AliveNo. at 31st% DecNo. % Identical 8 100 6 100 21 100 5 100 12 100 1,000 1 AG 0 0 0 0 0 0 0 0 0 0 2 AG 0 0 0 0 0 0 0 0 0 0 3 AG Disparate 0 0 0 0 0 0 0 0 0 0 TOTAL 800 8 100 6 100 21 100 5 100 12 100

Year 1992 1993 1994 1995 1996 HLA Match600 No. % No. % No. % No. % No. % Identical 20 100 18 100 23 96 29 100 26 100 1 AG 0 0 0 0 1 4 0 0 0 0 2 AG 400 0 0 0 0 0 0 0 0 0 0 3 AG Disparate

umber of patients (n) 0 0 0 0 0 0 0 0 0 0

TOTALN 20 100 18 100 24 100 29 100 26 100 200 Year 1997 1998 1999 2000 2001 HLA Match No. % No. % No. % No. % No. % Identical 0 25 93 31 97 40 91 52 93 69 92 1 AG 872 88 89 790 91 920 93 940 95 96 973 98 997 00 010 02 03 040 05 064 07 08 5 2 AG 0 0 1 3 1Year 2 4 7 1 1 3 AG Disparate 0 0 0 0 0 0 0 0 1 1 TOTAL 27 100 32 100 44 100 56 100 75 100

Year 2002 2003 2004 2005 2006 HLA Match No. % No. % No. % No. % No. % Identical 70 93 78 94 83 92 86 95 81 93 1 AG 3 4 3 4 3 3 4 4 4 5 2 AG 2 3 2 2 4 4 1 1 2 2 3 AG Disparate 0 0 0 0 0 0 0 0 0 0 TOTAL 75 100 83 100 90 100 91 100 87 100

Year 2007 2008 Total HLA Match No. % No. % No. % Identical 68 91 102 89 953 94 1 AG 4 5 7 6 38 4 2 AG 2 3 6 5 26 3 3 AG Disparate 1 1 0 0 2 0 TOTAL 75 100 115 100 1019 100

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Table1.0 INTRODUCTION 1.3.6: Distribution of Patients by Allogeneic Donor Relationship, 1987-2008 Year 1987 1988 1989 1990 1991 HaematopoieticAllogeneic Donor Relationship Stem Cell TransplantationNo. % No. (H SCT)% activityNo. in% MalaysiaNo. % continuedNo. % to increaseSibling at a steady pace which 8was 100 reflected 6 in100 the increased21 100 number5 100 of transplants11 92 th performedUnrelated year on year. This 5 0 annual0 report0 attempts0 0 to provide0 0an accurate0 0 record0 of the Marrow total number of HSCT performed0 0 in0 2008. 0 Overall0 access0 to0 HSCT0 remained0 0 low atPBSC 6 per / Marrow million + PBSC population. 0 0 0 0 0 0 0 0 0 0 Cord blood / Marrow + cord 0 0 0 0 0 0 0 0 0 0 1.1OthersSTOCK AND FLOW 0 0 0 0 0 0 0 0 1 8 TOTAL 8 100 6 100 21 100 5 100 12 100 In 2008 a total of 181 HSCT were perfor med. Two new centres namely Hospital PulauYear Pinang and Hospital Universiti1992 Sains1993 Malaysia1994 started autologous1995 1996 HSCT makingAllogeneic a Donor total Relationshipof 12 transplant No. centres % operatingNo. % in Malaysia.No. % TheNo. Adult % TransplantNo. % teamSibling which operated in Hospital20 Kuala100 18 Lumpur 100 shifted22 to92 Hospital29 100 Ampang 26 100 in Unrelated 0 0 0 0 0 0 0 0 0 0 December 2006, has performed the most number of HSCT in 2008 contributing 31% Marrow 0 0 0 0 0 0 0 0 0 0 of the total national transplant activity. PBSC / Marrow + PBSC 0 0 0 0 0 0 0 0 0 0 Cord blood / Marrow + cord 0 0 0 0 0 0 0 0 0 0 TableOthers 1.1.1: Stock and Flow of Blood0 0and Marrow0 0 Transplantation,2 8 01987-2008 0 0 0 YearTOTAL 1987 1988 198920 1990100 199118 1001992 241993 1001994 291995100 199626 1997100 New transplant 8 6 22 5 12 21 19 25 30 28 33 patients Year 1997 1998 1999 2000 2001 Deaths 1 1 6 6 1 2 9 5 17 11 15 Allogeneic Donor Relationship No. % No. % No. % No. % No. % Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 upSibling 26 96 32 100 44 100 55 98 72 96 AliveUnrelated at 31 st 1 4 0 0 0 0 1 2 3 4 7 12 28 27 38 57 67 87 100 117 135 December Marrow 0 0 0 0 0 0 0 0 0 0 PBSC / Marrow + PBSC 0 0 0 0 0 0 0 0 0 0 Year Cord blood / Marrow1998 +1999 cord 20001 2001100 20020 20030 20040 20050 1 2006100 20073 2008100 NewOthers transplant 0 0 0 0 0 0 0 0 0 0 49 62 94 108 114 128 140 148 136 149 181 patientsTOTAL 27 100 32 100 44 100 56 100 75 100 Deaths 17 16 31 47 34 56 52 61 42 50 71 Lost to follow- Year 0 0 0 20020 0 2003 0 02004 0 20050 0 20060 up Allogeneic Donor Relationship No. % No. % No. % No. % No. % Alive at 31st Sibling 167 213 27671 33795 41780 96489 81577 90664 83 758 91 85776 96787 December Unrelated 4 5 3 4 9 10 8 9 11 13 Marrow 0 0 0 0 1 11 2 25 2 18 PBSC / Marrow + PBSC 0 0 0 0 2 22 1 13 1 9 Cord blood / Marrow + cord 4 100 3 100 6 67 5 63 8 73 Others 0 0 0 0 0 0 0 0 0 0 TOTAL 75 100 83 100 90 100 91 100 87 100

Year 2007 2008 Total Allogeneic Donor Relationship No. % No. % No. % Sibling 65 87 102 89 953 94 Unrelated 10 13 13 11 63 6 Marrow 1 10 0 0 6 10 PBSC / Marrow + PBSC 2 20 5 38 11 17 Cord blood / Marrow + cord 7 70 8 62 46 73 Others 0 0 0 0 3 0 TOTAL 75 100 115 100 1019 100 *excluding autologous, including syngeneic

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure1.4 TRANSPLANT 1.1.1: Stock and OUTCOMES Flow of Blood and Marrow Transplantation, 1987-2008

A total of 71 deaths were reported for the 181 HSCT in 2008 making the mortality rate 39%. Underlying disease contributedNew patients to 51% of these Alivedeaths at followed 31st Dec by sepsis in 20% and1,000 graft-versus-host disease in 10%.

Paediatric patients had better survival rates as shown in Figure 1.4.3. The survival curve for the most recent transplants (1999-2008) compared with the previous decade 800 is inferior most probably because older patients (hence higher risk) had access to HSCT and more complicated unrelated donor HSCT had been undertaken.

600 Table 1.4.1: Distribution of Patients by Cause of Death, 1987-2008 Year 1987 1988 1989 1990 1991 Cause of death No. % No. % No. % No. % No. % 400 Sepsis 1 100 0 0 0 0 0 0 1 100 GVHDumber of patients (n) 0 0 0 0 0 0 1 17 0 0 N Underlying disease 0 0 0 0 6 100 5 83 0 0 200 Haemorrhage 0 0 1 100 0 0 0 0 0 0 VOD 0 0 0 0 0 0 0 0 0 0 Organ Failure0 0 0 0 0 0 0 0 0 0 0 Interstitial pneumonitis87 88 89 90 910 92 930 94 950 96 970 98 990 00 010 02 030 04 050 06 070 08 0 Secondary malignancy 0 0 0 Year0 0 0 0 0 0 0 Others 0 0 0 0 0 0 0 0 0 0 Unknown 0 0 0 0 0 0 0 0 0 0 TOTAL 1 100 1 100 6 100 6 100 1 100

Year 1992 1993 1994 1995 1996 Cause of death No. % No. % No. % No. % No. % Sepsis 1 50 2 22 1 20 4 24 6 55 GVHD 0 0 0 0 0 0 4 24 0 0 Underlying disease 0 0 6 67 3 60 3 18 3 27 Haemorrhage 0 0 1 11 0 0 2 12 1 9 VOD 0 0 0 0 0 0 1 6 1 9 Organ Failure 1 50 0 0 1 20 2 12 0 0 Interstitial pneumonitis 0 0 0 0 0 0 0 0 0 0 Secondary malignancy 0 0 0 0 0 0 1 6 0 0 Others 0 0 0 0 0 0 0 0 0 0 Unknown 0 0 0 0 0 0 0 0 0 0 TOTAL 2 100 9 100 5 100 17 100 11 100

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Year1.0 INTRODUCTION1997 1998 1999 2000 2001 Cause of death No. % No. % No. % No. % No. % SepsisHaematopoietic 5Stem 33Cell Transplantation1 6 (H6SCT) 38activity 2in Malaysia6 continued4 9 to increase at a steady pace which was reflected in the increased number of transplants GVHD 0 0 2 12 1 6 2 6 4 9 performed year on year. This 5th annual report attempts to provide an accurate record Underlying disease 9 60 11 65 7 44 22 71 33 70 of the total number of HSCT performed in 2008. Overall access to HSCT remained Haemorrhage low at 6 per million0 population.0 1 6 0 0 3 10 2 4 VOD 0 0 0 0 0 0 1 3 2 4 Organ1.1 STOCKFailure AND1 FLOW7 0 0 1 6 0 0 0 0 Interstitial pneumonitis 0 0 1 6 0 0 1 3 2 4 SecondaryIn 2008 a total of 181 HSCT were performed. Two new centres namely Hospital malignancy 0 0 0 0 0 0 0 0 0 0 Pulau Pinang and Hospital Universiti Sains Malaysia started autologous HSCT Others 0 0 0 0 1 6 0 0 0 0 making a total of 12 transplant centres operating in Malaysia. The Adult Transplant Unknown team which operated0 0 in Hospital1 Kuala6 Lumpur0 0 shifted 0 to Hospital0 Ampang0 0 in TOTALDecember 2006,15 has performed100 17 the most100 number16 of100 HSCT 31in 2008100 contributing 47 31%100 of the total national transplant activity. 2002 2003 2004 2005 2006 Year CauseTable of 1.1.1: death StockNo. and Flow% ofNo. Blood %and MarrowNo. Transplantation,% No. %1987-2008No. % SepsisYear 19876 198818 198915 199027 199111 199221 1993 131994 211995 19968 199719 GVHDNew transplant 3 9 5 9 9 17 7 11 2 5 8 6 22 5 12 21 19 25 30 28 33 Underlyingpatients disease 21 62 31 55 27 52 30 49 28 67 Deaths 1 1 6 6 1 2 9 5 17 11 15 Haemorrhage 0 0 0 0 2 4 2 3 1 2 Lost to follow- VOD 0 0 0 0 0 0 0 0 0 0 0 up 0 0 0 0 0 0 0 0 3 7 OrganAlive Failure at 31st 3 9 2 4 0 0 1 2 0 0 7 12 28 27 38 57 67 87 100 117 135 InterstitialDecember pneumonitis 0 0 1 2 0 0 2 3 0 0 Secondary malignancyYear 19980 19990 20000 20010 20020 2003 0 2004 02005 02006 20070 20080 OthersNew transplant 049 062 940 1080 1140 128 0 140 3 148 5136 0149 1810 Unknownpatients 1 3 2 4 3 6 3 5 0 0 Deaths 17 16 31 47 34 56 52 61 42 50 71 TOTAL 34 100 56 100 52 100 61 100 42 100 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up 2007 2008 Total YearAlive at 31st 167 213 276 337 417 489 577 664 758 857 967 CauseDecember of death No. % No. % No. % Sepsis 6 12 14 20 107 19 GVHD 1 2 7 10 48 9 Underlying disease 27 54 36 51 308 56 Haemorrhage 1 2 3 4 20 4 VOD 0 0 3 4 11 2 Organ Failure 0 0 0 0 12 2 Interstitial pneumonitis 0 0 1 1 8 1 Secondary malignancy 0 0 0 0 1 0 Others 11 22 5 7 20 4 Unknown 4 8 2 3 16 3 TOTAL 50 100 71 100 551 100

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Figure 1.4.1: Patient Survival by Year of Transplant, 1987-2008 New patients Alive at 31st Dec 1.00 1,000 0.75 800

0.50 600 Cumulative Cumulative survival

0.25 400 umber of patients (n) N 200 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Duration in years 0 87 88 89 90 91Year 92 931987-1992 94 95 96 97 98 99 00Year 01 02 1993-1998 03 04 05 06 07 08 Year 1999-2008 Year

Figure 1.4.2: Patient Survival by Gender, 1987-2008 1.00 0.75 0.50 Cumulative Cumulative survival 0.25 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Duration in years

Male Female

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Figure1.0 INTRODUCTION 1.4.3: Patient Survival by Age Group, 1987-2008

Haematopoietic Stem Cell Transplantation (HSCT) activity in Malaysia continued to 1.00 increase at a steady pace which was reflected in the increased number of transplants performed year on year. This 5th annual report attempts to provide an accurate record of the total number of HSCT performed in 2008. Overall access to HSCT remained low at 0.75 6 per million population.

1.1 STOCK AND FLOW

In 20080.50 a total of 181 HSCT were performed. Two new centres namely Hospital Pulau Pinang and Hospital Universiti Sains Malaysia started autologous HSCT making a total of 12 transplant centres operating in Malaysia. The Adult Transplant Cumulativesurvival team which0.25 operated in Hospital Kuala Lumpur shifted to Hospital Ampang in December 2006, has performed the most number of HSCT in 2008 contributing 31% of the total national transplant activity.

Table 1.1.1:0.00 Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Year 0 1 19872 3 19884 5 19896 719908 9199110 11199212 199313 14 199415 161995 17 181996 19 201997 Duration in years New transplant 8 6 22 5 12 21 19 25 30 28 33 patients 0-9 years 10-19 years Deaths 1 1 6 20-396 years1 2 9 40 years5 17 11 15 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 7 12 28 27 38 57 67 87 100 117 135 FigureDecember 1.4.4: Patient Survival by Type of Transplant, 1987-2008

Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 New transplant1.00 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 17 16 31 47 34 56 52 61 42 50 71 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up 0.75 Alive at 31st 167 213 276 337 417 489 577 664 758 857 967 December

0.50 Cumulative Cumulative survival 0.25 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Duration in years

Allogeneic + Syngeneic Autologous

337

Figures 1.5.1 to 1.5.7 show theN ew disease patients free survival for Alive individual at 31st Dec diseases while Figures 1.5.8 to 1.5.13 show the breakdown between paediatric and adult patients. 1,000 Superior survival was seen in adults for acute lymphoblastic leukaemia and aplastic anaemia.

Figure 8001.5.1: Disease-free Survival for Acute Myeloid Leukaemia, 1987-2008 (Allogeneic vs. Autologous) 600 1.00

400 umber of patients (n) 0.75 N 200 0.50 0 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 Cumulative Cumulative survival Year

0.25

0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Duration in years

Allogeneic Autologous

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Figure1.0 INTRODUCTION 1.5.2: Disease-free Survival for Acute Lymphoblastic Leukaemia, 1987-2008 (Allogeneic) Haematopoietic Stem Cell Transplantation (HSCT) activity in Malaysia continued to increase at a steady pace which was reflected in the increased number of transplants 1.00 performed year on year. This 5th annual report attempts to provide an accurate record of the total number of HSCT performed in 2008. Overall access to HSCT remained low at 6 per million population. 0.75 1.1 STOCK AND FLOW

In 2008 a total of 181 HSCT were performed. Two new centres namely Hospital

Pulau 0.50 Pinang and Hospital Universiti Sains Malaysia started autologous HSCT making a total of 12 transplant centres operating in Malaysia. The Adult Transplant team which operated in Hospital Kuala Lumpur shifted to Hospital Ampang in December Cumulative survival 2006, has performed the most number of HSCT in 2008 contributing 31%

of the 0.25 total national transplant activity.

Table 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Year 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 New transplant0.00 8 6 22 5 12 21 19 25 30 28 33 patients 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Deaths 1 1 6 6 Duration1 in years2 9 5 17 11 15 Lost to follow- 0 0 0 0 0Allogeneic 0 0 0 0 0 0 up Alive at 31st 7 12 28 27 38 57 67 87 100 117 135 December Figure 1.5.3: Disease-free Survival for Thalassaemia, 1987-2008 (Allogeneic) Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 New transplant

1.00 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 17 16 31 47 34 56 52 61 42 50 71 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up st Alive at 0.75 31 167 213 276 337 417 489 577 664 758 857 967 December

0.50 Cumulative Cumulative survival 0.25 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Duration in years

Allogeneic

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Figure 1.5.4: Disease-free Survival for Non-Hodgkin’s Lymphoma, 1987-2008 (Allogeneic vs. Autologous) New patients Alive at 31st Dec

1,0001.00

800 0.75

600 0.50

400 Cumulative Cumulative survival umber of patients (n) N 0.25 200

0.00 0 0 1 872 88 389 904 915 926 937 948 95 969 9710 9811 9912 0013 0114 0215 03 0416 0517 0618 0719 08 20 Duration in years Year Allogeneic Autologous

Figure 1.5.5 Disease-free Survival for Hodgkin’s Disease, 1987-2008 (Autologous) 1.00 0.75 0.50 Cumulative Cumulative survival 0.25 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Duration in years

Autologous

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Figure1.0 INTRODUCTION 1.5.6: Disease-free Survival for Chronic Myeloid Leukaemia, 1987-2008 (Allogeneic) Haematopoietic Stem Cell Transplantation (HSCT) activity in Malaysia continued to increase at a steady pace which was reflected in the increased number of transplants 1.00 performed year on year. This 5th annual report attempts to provide an accurate record of the total number of HSCT performed in 2008. Overall access to HSCT remained low at 6 per million population. 0.75 1.1 STOCK AND FLOW

In 2008 a total of 181 HSCT were performed. Two new centres namely Hospital

of the 0.25 total national transplant activity.

FigureYear 1.5.7: Disease-free1998 1999 Survival 2000 for2001 Aplastic 2002 Anaemia,2003 2004 1987-2008 2005 2006 (Allogeneic) 2007 2008 New transplant 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 17 16 31 47 34 56 52 61 42 50 71

Lost to follow-1.00 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 167 213 276 337 417 489 577 664 758 857 967 December

0.75 0.50 Cumulative Cumulative survival 0.25 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Duration in years

Allogeneic

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Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1:1.5.8: StockDisease-free and Flow Survival of Blood by Ageand MarrowGroup for Transplantation, Acute Myeloid 1987-2008 Leukaemia, 1987-2008 New patients Alive at 31st Dec 1.00 1,000

0.75 800

0.50 600

Cumulative Cumulative survival 400 0.25 umber of patients (n) N 200 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 87 88 89 90 91 92 93 94Duration 95 96 97 in 98 years 99 00 01 02 03 04 05 06 07 08 PaediatricYear Adult

Paediatric is defined as age d18 years and adult age >18 years

Figure 1.5.9: Disease-free Survival by Age Group for Acute Lymphoblastic Leukaemia, 1987-2008 1.00 0.75 0.50 Cumulative Cumulative survival 0.25 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Duration in years

Paediatric Adult

Pediatric is defined as age d18 years and adult age >18 years 388

FifthFifth Report Report of of the the BLOOD AND MARROW TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008

Figure1.0 INTRODUCTION 1.5.10: Disease-free Survival by Age Group for Thalassaemia, 1987-2008

In 2008 a total of 181 HSCT were performed. Two new centres namely Hospital

of the 0.25 total national transplant activity.

Table 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Year 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 New transplant 8 6 22 5 12 21 19 25 30 28 33 patients 0.00 Deaths 0 1 21 3 41 5 66 7 6 8 9 1 10 112 12 139 14 515 16 1717 181119 2015 Lost to follow- Duration in years 0 0 0 0 0 0 0 0 0 0 0 up PediatricAlive at 31 isst defined as age d18 years and adult age >18 years 7 12 28 27 38 57 67 87 100 117 135 December Figure 1.5.11: Disease-free Survival by Age Group for Non-Hodgkin’s Lymphoma, 1987-2008Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 New transplant 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 17 16 31 47 34 56 52 61 42 50 71

Lost to follow-1.00 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 167 213 276 337 417 489 577 664 758 857 967 December

0.75 0.50 Cumulative Cumulative survival 0.25 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Duration in years

Paediatric Adult

Pediatric is defined as age d18 years and adult age >18 years 397

Fifth ReportReport of the National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION National Transplant Registry 2008 BLOOD AND MARROW TRANSPLANTATION Figure 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Figure 1.5.12: Disease-free Survival by Age Group for Hodgkin’s Disease, 1987-2008 New patients Alive at 31st Dec

1,0001.00

800 0.75

600 0.50

400 Cumulative Cumulative survival umber of patients (n) 0.25 N 200 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 87 88 89 90 91 92 93 94Duration 95 96 97 in 98 years 99 00 01 02 03 04 05 06 07 08 PaediatricYear Adult

Paediatric is defined as age d18 years and adult age >18 years

Figure 1.5.13: Disease-free Survival by Age Group for Chronic Myeloid Leukaemia, 1987-2008

1.00 0.75 0.50 Cumulative Cumulative survival 0.25 0.00 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Duration in years

Paediatric Adult

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Figure1.0 INTRODUCTION 1.5.14: Disease-free Survival by Age Group for Aplastic Anaemia, 1987-2008

Haematopoietic Stem Cell Transplantation (H SCT) activity in Malaysia continued to increase at a steady pace which was reflected in the increased number of transplants performed1.00 year on year. This 5th annual report attempts to provide an accurate record of the total number of HSCT performed in 2008. Overall access to HSCT remained low at 6 per million population. 0.75 1.1 STOCK AND FLOW

In 2008 a total of 181 HSCT were performed. Two new centres namely Hospital Pulau 0.50 Pinang and Hospital Universiti Sains Malaysia started autologous HSCT making a total of 12 transplant centres operating in Malaysia. The Adult Transplant

team Cumulative survival which operated in Hospital Kuala Lumpur shifted to Hospital Ampang in

December0.25 2006, has performed the most number of HSCT in 2008 contributing 31% of the total national transplant activity.

Table 1.1.1: Stock and Flow of Blood and Marrow Transplantation, 1987-2008 Year 0.00 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 New transplant0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 8 6 22 5 Duration12 in years21 19 25 30 28 33 patients Deaths 1 1 6 6Paediatric 1 2 9 Adult5 17 11 15 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up PediatricAlive at is31 definedst as age d18 years and adult age >18 years 7 12 28 27 38 57 67 87 100 117 135 December

Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 New transplant 49 62 94 108 114 128 140 148 136 149 181 patients Deaths 17 16 31 47 34 56 52 61 42 50 71 Lost to follow- 0 0 0 0 0 0 0 0 0 0 0 up Alive at 31st 167 213 276 337 417 489 577 664 758 857 967 December

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CHAPTER 2

CORNEAL TRANSPLANTATION

Editors: Dr Shamala Retnasabapathy Dr Chandramalar Santhirathelagan

Expert Panel: Dr Shamala Retnasabapathy (Chairperson) Dr Chandramalar Santhirathelagan Dr Choong Yean Yaw Dr Michael Law Sie Haur Prof Dato’ Dr Veera Ramani Dr Thiageswari Umapathy Assoc Prof Dr Mohtar Ibrahim

Contents

2.0 Introduction

2.1 Corneal Transplant Activities and Trends 1998-2008 x Transplant Rates x Type of Transplant

2.2 Recipients’ Characteristics 1998-2008 x Demographics x Primary Diagnosis

2.3 Transplant Practices 2004 - 2008 x Recipient Details x Donor Details x Transplant Practices

2.4 Corneal Transplant Outcome 2004-2008 x Outcome - Graft Survival x Outome - Vision

2.5 Post Corneal Transplant Complications 2004-2008 Fifth Report of the National TransplantFifth Registry Report of2008 the Fifth Report of the CORNEAL TRANSPLANTATION National Transplant Registry 2008 CORNEAL TRANSPLANTATION National Transplant Registry 2008

List of Tables TableList of 2.1.1: Tables Number of Corneal Transplantation and Transplant Rate per million Table 2.1.1:population Number of (pmp), Corneal 1998-2008 Transplant...... 46ation and Transplant Rate per million Table 2.1.2: populationTypes of Corn (pmp),eal Transplant,1998-2008 ...... 461998-2008...... 47 TableTable 2.2.1:2.1.2: GenderTypes of Di Cornstribution,eal Transplant, 1998-2008...... 48 1998-2008...... 47 TableTable 2.2.2:2.2.1: EthnicGender Di Distribution,stribution, 1998-2008...... 48 1998-2008...... 48 TableTable 2.2.3:2.2.2: AgeEthnic Distribution Distribution, of Corneal1998-2008...... 48 Transplant Recipient Patients, 1998-2008...... 49 TableTable 2.2.4:2.2.3: PrimaryAge Distribution Diagnosis, of 1998-2008...... 50Corneal Transplant Recipient Patients, 1998-2008...... 49 TableTable 2.2.5:2.2.4: IndicationsPrimary Diagnosis, of Corneal 1998-2008...... 50 Transplant, 2004-2008 ...... 51 TableTable 2.3.1.1:2.2.5: Indications No of Previous of Corneal Grafts Transplant, in Grafted 2004-2008Eye, 2004-2008...... 51...... 52 TableTable 2.3.1.2:2.3.1.1: OcularNo of Previous Co-morbidity, Grafts 2004-2008 in Grafted ...... 52Eye, 2004-2008 ...... 52 TableTable 2.3.1.3:2.3.1.2: Pre-operativeOcular Co-morbidity, Vision, 2004-20082004-2008...... 53...... 52 TableTable 2.3.2.1:2.3.1.3: SourcePre-operative of Donor Vision, Cornea 2004-2008 Tissue, 2004-2008...... 53...... 54 TableTable 2.3.2.2:2.3.2.1: DonorSource Age of Donor Distribution, Cornea 2004-2008...... 55Tissue, 2004-2008 ...... 54 TableTable 2.3.2.3:2.3.2.2: PreservationDonor Age Distribution, Media, 2004-2008...... 56 2004-2008...... 55 TableTable 2.3.2.4:2.3.2.3: CausePreservation of Death Media, in Corneal 2004-2008...... 56 Donors, 2004-2008...... 57 TableTable 2.3.3.1:2.3.2.4: TypesCause ofof Surgeries,Death in Corneal 2004-2008...... 58 Donors, 2004-2008...... 57 TableTable 2.3.3.2:2.3.3.1: TypesTypes ofof CombinedSurgeries, 2004-2008...... 58Surgeries, 2004-2008 ...... 58 TableTable 2.3.3.3:2.3.3.2: RecipientTypes of CombinedCornea Trephine Surgeries, Size, 2004-2008 2004-2008...... 58...... 59 TableTable 2.3.3.4:2.3.3.3: DifferenceRecipient Corn in Trephinedea Trephine Sizes Size, of Recipient2004-2008 and...... 59 Donor Corneas, 2004- Table 2.3.3.4:2008...... 60 Difference in Trephined Sizes of Recipient and Donor Corneas, 2004- Table 2.3.3.5:2008...... 60 Suture Technique, 2004-2008...... 60 TableTable 2.4.1:2.3.3.5: Stock Suture and Technique, Flow - Graft 2004-2008 Status (Whole...... 60 Database)...... 61 TableTable 2.4.2.1:2.4.1: Stock Graft and Survival, Flow - 2004-2008Graft Status...... 62 (Whole Database)...... 61 TableTable 2.4.2.2:2.4.2.1: GraftGraft SurvivalSurvival, by 2004-2008 Optical and...... 62 Non-optical Indication, 2004-2008 ...... 63 TableTable 2.4.2.3:2.4.2.2: GraftGraft SurvivalSurvival byby Gender,Optical and2004-2008 Non-optical ...... 64 Indication, 2004-2008 ...... 63 TableTable 2.4.2.4:2.4.2.3: GraftGraft SurvivalSurvival byby Age,Gender, 2004-2008 2004-2008...... 65 ...... 64 TableTable 2.4.2.5:2.4.2.4: CausesGraft Survival of Graft by Failure Age, ...... 662004-2008 ...... 65 TableTable 2.4.3.1:2.4.2.5: AvailabilityCauses of Graft of Data Failure on Po...... 66st Corneal Transplant Unaided Vision ...... 67 TableTable 2.4.3.2:2.4.3.1: UnaidedAvailability Visual of Data Outcom on Poe Afterst Corneal Cornea Transplant Transplant Unaided Surgery Vision...... 68...... 67 TableTable 2.4.3.3:2.4.3.2: UnaidedUnaided VisionVisual forOutcom Opticale After and NonCornea Optical Transplant Cases ...... 69Surgery...... 68 TableTable 2.5.1:2.4.3.3: Post Unaided Transplant Vision Complications for Optical and...... 70 Non Optical Cases...... 69 TableTable 2.5.2:2.5.1: PostPost TransplantTransplant GraftComplications Rejection...... 70 Types...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70

List of Figures List of Figures Figure 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008...... 54 FigureFigure 2.3.2.3:2.3.2.1: PreservationSource of Donor Media, Cornea 2004-2008 Tissue, ...... 56 2004-2008...... 54 FigureFigure 2.4.2.1:2.3.2.3: GraftPreservation Survival, Media, 2004-2008...... 62 2004-2008 ...... 56 FigureFigure 2.4.2.2:2.4.2.1: GraftGraft SurvivalSurvival, by 2004-2008...... 62 Optical and Non-optical Indication, 2004-2008...... 63 FigureFigure 2.4.2.3:2.4.2.2: GraftGraft SurvivalSurvival byby Gender,Optical and2004-2008...... 64 Non-optical Indication, 2004-2008...... 63 FigureFigure 2.4.2.4:2.4.2.3: GraftGraft SurvivalSurvival byby Age,Gender, 2004-2008 2004-2008...... 64...... 65 FigureFigure 2.4.3.2:2.4.2.4: UnaidedGraft Survival Visual by Outcome Age, 2004-2008 After Corneal...... 65 Transplant Surgery ...... 68 FigureFigure 2.4.3.3:2.4.3.2: CumulativeUnaided Visual Probability Outcome for After Unaided Corneal Vision Transplant in Grafts Surgery...... 69...... 68 Figure 2.4.3.3: Cumulative Probability for Unaided Vision in Grafts...... 69

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Fifth Report of the FifthNational ReportFifth Transplant Report of the of theRegistry 2008 CORNEAL TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008 CORNEAL TRANSPLANTATION

2.0 INTRODUCTION 2.0 INTRODUCTION Corneal transplantation surgery allows restoration of vision in patients with corneal Cornealblindness. transplantation Corneal transplantation surgery allows in Malays restorationia dates of back vision to in the patients 1970’s. with Today corneal it is blindness.performed Cornealby ophthalmologists transplantation both in in Malaysthe governia datesment backand private to the sectors 1970’s. with Today each centre it is performedcontributing by dataophthalmologists towards the Nati bothonal in Transplantthe govern Registry.ment and private sectors with each centre contributing data towards the National Transplant Registry. The National Transplant Registry (NTR) was established in December 2003. The corneal Thetransplant National section Transplant of the Registry NTR is (NTR) a systematic was established centralised in December data collection 2003. of The all corneal corneal transplanttransplantations section perf oformed the NTR in the is country. a systematic centralised data collection of all corneal transplantations performed in the country. A total of 46 centres registered and agreed to provide information on retrospective and Aprospective total of 46 corneal centres transplant registered activities. and agreed A tota tol provideof 75 contributing information surg oneons retrospective participated and in prospectivethe NTR – Cornealcorneal transplantTransplant activities.section. Participation A total of 75 was contributing on a voluntary surg basis.eons participated in the NTR – Corneal Transplant section. Participation was on a voluntary basis. Retrospective data (from 1998 to 2003) on corneal transplant activities were collected to Retrospectiveidentify the trend data of (from corneal 1998 transplant to 2003) surgery on corneal in the transplarecent past.nt activities Prospective were data collected (from the to identifyyear 2004) the trend on cornealof corneal transplant transplant activities surgery involvedin the recent gathering past. Prospective information data on (from all cornea the yeartransplants 2004) performed on corneal in transplant Malaysia activitieson two forms. involved The first gathering form is information the i) Corneal on Transplant all cornea transplantsNotification performed Form (Formin Malaysia N-cds) on whichtwo forms. is completed The first form at the is time the i) of Corneal surgery Transplant and gathers Notificationinformation Formon the (Formrecipient, N-cds) operative which procedur is completede and the at donor. the time The of second surgery form and is gathers the ii) informationCorneal Transplant on the recipient, Outcome operative Form procedur(Form O-cds)e and the which donor. is completedThe second at form the endis the of ii) 12 Cornealmonths and Transplant annually Outcomethereafter. FormFollow-up (Form only O-cds) ceases which upon isfailure completed of graft, at death the end or loss of 12 to monthsfollow-up and of annually the patient. thereafter. Follow-up only ceases upon failure of graft, death or loss to follow-up of the patient.

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Fifth Report of the National TransplantFifth Registry Report of2008 the Fifth Report of the CORNEAL TRANSPLANTATION National Transplant Registry 2008 CORNEAL TRANSPLANTATION National Transplant Registry 2008

The Corneal section of the NTR will be discussed under 5 sections. List of Tables SectionTable 2.1.1: 2.1 andNumber Section of Corneal 2.2 covers Transplant notificatiationon and data Transplant on corneal Rate transplantation per million over 9 years from population 1998 to 2007.(pmp), Effort1998-2008 was...... 46 made to ensure that all cases of corneal transplantationTable 2.1.2: Types were of Corn reported.eal Transplant, To the best 1998-2008...... 47 of our knowledge, this report provides informationTable 2.2.1: onGender all corneal Distribution, transplants 1998-2008...... 48 performed in the country. Table 2.2.2: Ethnic Distribution, 1998-2008...... 48 SectionTable 2.2.3: 2.3 Age covers Distribution prospective of Corneal notification Transplant data on Recipient corneal Patients, transplantation 1998-2008...... 49 performed (fromTable 20042.2.4: onwards) Primary Diagnosis, 1998-2008...... 50 Table 2.2.5: Indications of Corneal Transplant, 2004-2008 ...... 51 SectionTable 2.3.1.1: 2.4 covers No of prospective Previous Grafts outcome in Grafted data on Eye, corneal 2004-2008 transplant...... 52ation performed (from 2004Table onwards). 2.3.1.2: Ocular Co-morbidity, 2004-2008 ...... 52 Table 2.3.1.3: Pre-operative Vision, 2004-2008...... 53 SectionTable 2.3.2.1: 2.5 covers Source prospective of Donor Cornea outcome Tissue, data 2004-2008 on corneal ...... 54 transplantation complications (fromTable 20042.3.2.2: onwards). Donor Age Distribution, 2004-2008...... 55 Table 2.3.2.3: Preservation Media, 2004-2008...... 56 Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008...... 57 Table 2.3.3.1: Types of Surgeries, 2004-2008...... 58 Table 2.3.3.2: Types of Combined Surgeries, 2004-2008 ...... 58 Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008...... 59 Table 2.3.3.4: Difference in Trephined Sizes of Recipient and Donor Corneas, 2004- 2008...... 60 Table 2.3.3.5: Suture Technique, 2004-2008...... 60 Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61 Table 2.4.2.1: Graft Survival, 2004-2008...... 62 Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63 Table 2.4.2.3: Graft Survival by Gender, 2004-2008 ...... 64 Table 2.4.2.4: Graft Survival by Age, 2004-2008 ...... 65 Table 2.4.2.5: Causes of Graft Failure...... 66 Table 2.4.3.1: Availability of Data on Post Corneal Transplant Unaided Vision ...... 67 Table 2.4.3.2: Unaided Visual Outcome After Cornea Transplant Surgery...... 68 Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69 Table 2.5.1: Post Transplant Complications...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70

List of Figures Figure 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008...... 54 Figure 2.3.2.3: Preservation Media, 2004-2008 ...... 56 Figure 2.4.2.1: Graft Survival, 2004-2008...... 62 Figure 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008...... 63 Figure 2.4.2.3: Graft Survival by Gender, 2004-2008...... 64 Figure 2.4.2.4: Graft Survival by Age, 2004-2008...... 65 Figure 2.4.3.2: Unaided Visual Outcome After Corneal Transplant Surgery ...... 68 Figure 2.4.3.3: Cumulative Probability for Unaided Vision in Grafts...... 69

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2.1 CORNEAL TRANSPLANT ACTIVITIES AND TRENDS (1998 – 2008) 2.0 INTRODUCTION The number of cornea transplants performed between 1998 and 2008 showed an increasing Cornealtrend from transplantation 119 in 1998 surgery to 230 allows in 2008. restor Theation highe ofst numbervision in of patients corneal transplantation with corneal blindness.performed Cornealwas in the transplantation year 2008 (Table in 2.1.1). Malays ia dates back to the 1970’s. Today it is performed by ophthalmologists both in the government and private sectors with each centre contributingPenetrating data keratoplasty towards the was Nati theonal most Transplant frequent Registry. type of cornea transplant surgery and was performed in 91% of cases (Table 2.1.2). The National Transplant Registry (NTR) was established in December 2003. The corneal transplant section of the NTR is a systematic centralised data collection of all corneal transplantationsTable 2.1.1: Number performed of Corneal in the country.Transplantatio n and Transplant Rate per million population (pmp), 1998-2008 AYear total of 46 centres registered1998 1999 and 2000 agreed 2001 to provide2002 2003 information 2004 2005 on retrospective2006 2007 and2008 prospectiveNo. of new transplants corneal transplant119 activities.122 126 A tota221 l of203 75 contributing165 184 surg192eons 177 participated 196 230in theNew NTR transplant – Corneal rate, pmp Transplant 5 section.5 Participation5 9 8was on7 a voluntary7 basis.7 7 7 8

Retrospective data (from 1998 to 2003) on corneal transplant activities were collected to identify the trend of corneal transplant surgery in the recent past. Prospective data (from the year 2004) on corneal transplant activities involved gathering information on all cornea transplants performed in Malaysia on two forms. The first form is the i) Corneal Transplant Notification Form (Form N-cds) which is completed at the time of surgery and gathers information on the recipient, operative procedure and the donor. The second form is the ii) Corneal Transplant Outcome Form (Form O-cds) which is completed at the end of 12 months and annually thereafter. Follow-up only ceases upon failure of graft, death or loss to follow-up of the patient.

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List of Tables Table 2.1.1: Number of Corneal Transplantation and Transplant Rate per million population (pmp), 1998-2008...... 46 Table 2.1.2: Types of Corneal Transplant, 1998-2008...... 47 Table 2.2.1: Gender Distribution, 1998-2008...... 48 Table 2.2.2: Ethnic Distribution, 1998-2008...... 48 Table 2.2.3: Age Distribution of Corneal Transplant Recipient Patients, 1998-2008...... 49 Table 2.2.4: Primary Diagnosis, 1998-2008...... 50 Table 2.2.5: Indications of Corneal Transplant, 2004-2008 ...... 51 Table 2.3.1.1: No of Previous Grafts in Grafted Eye, 2004-2008 ...... 52 Table 2.3.1.2: Ocular Co-morbidity, 2004-2008 ...... 52 Table 2.3.1.3: Pre-operative Vision, 2004-2008...... 53 Table 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008 ...... 54 Table 2.3.2.2: Donor Age Distribution, 2004-2008...... 55 Table 2.3.2.3: Preservation Media, 2004-2008...... 56 Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008...... 57 Table 2.3.3.1: Types of Surgeries, 2004-2008...... 58 Table 2.3.3.2: Types of Combined Surgeries, 2004-2008 ...... 58 Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008...... 59 Table 2.3.3.4: Difference in Trephined Sizes of Recipient and Donor Corneas, 2004- 2008...... 60 Table 2.3.3.5: Suture Technique, 2004-2008...... 60 Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61 Table 2.4.2.1: Graft Survival, 2004-2008...... 62 Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63 Table 2.4.2.3: Graft Survival by Gender, 2004-2008 ...... 64 Table 2.4.2.4: Graft Survival by Age, 2004-2008 ...... 65 Table 2.4.2.5: Causes of Graft Failure...... 66 Table 2.4.3.1: Availability of Data on Post Corneal Transplant Unaided Vision ...... 67 Table 2.4.3.2: Unaided Visual Outcome After Cornea Transplant Surgery...... 68 Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69 Table 2.5.1: Post Transplant Complications...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70

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Fifth Report of the FifthNational ReportFifth Report of Transplant the of the Registry 2008 CORNEAL TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008 CORNEAL TRANSPLANTATION

2.0 INTRODUCTION

Corneal transplantation surgery allows restoration of vision in patients with corneal blindness. Corneal transplantation in Malaysia dates back to the 1970’s. Today it is performed by ophthalmologists both in the government and private sectors with each centre contributing data towards the National Transplant Registry.

The National Transplant Registry (NTR) was established in December 2003. The corneal transplant section of the NTR is a systematic centralised data collection of all corneal transplantations performed in the country.

A total of 46 centres registered and agreed to provide information on retrospective and prospective corneal transplant activities. A total of 75 contributing surgeons participated in the NTR – Corneal Transplant section. Participation was on a voluntary basis.

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Fifth Report of the National TransplantFifth Report Registry of the 2008 Fifth Report of the CORNEAL TRANSPLANTATION National Transplant Registry 2008 CORNEAL TRANSPLANTATION National Transplant Registry 2008

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2.0 INTRODUCTION

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Fifth Report of the National TransplantFifth ReportRegistry of 2008 the Fifth Report of the CORNEAL TRANSPLANTATION National Transplant Registry 2008 CORNEAL TRANSPLANTATION National Transplant Registry 2008

Table 2.2.5: Indications of Corneal Transplant, 2004-2008 List of Tables 2004 2005 2006 2007 2008 TOTAL TableIndication 2.1.1: of Numbertransplant of Corneal(N=184) Transplant (N=192)ation and(N=177) Transplant (N=196) Rate per(N=230) million (N=979) population (pmp),No. 1998-2008 % No...... 46 % No. % No. % No. % No. % TableOptical 2.1.2: Types of Corneal120 Transplant, 65 135 1998-2008...... 4770 124 70 139 71 154 67 672 69 TableTectonic 2.2.1: Gender Distribution,26 1998-2008...... 4814 23 12 20 11 17 9 25 11 111 11 TableTherapeutic 2.2.2: Ethnic Distribution,27 1998-2008...... 4815 19 10 17 10 24 12 24 10 111 11 Table 2.2.3: Age Distribution of Corneal Transplant Recipient Patients, 1998-2008...... 49 Tectonic+Therapeutic 9 5 9 5 4 2 8 4 6 3 36 4 Table 2.2.4: Primary Diagnosis, 1998-2008...... 50 TableOptical+Tectonic 2.2.5: Indications of Corneal1 1Transplant, 1 1 2004-20081 1 ...... 510 0 1 0 4 0 TableOptical+Tectonic+Therapeutic 2.3.1.1: No of Previous 0Grafts 0 in Grafted1 1 Eye,0 2004-20080 1 ...... 521 1 0 3 0 TableOptical+Therapeutic 2.3.1.2: Ocular Co-morbidity,0 0 2004-20080 0 ...... 525 3 6 3 7 3 18 2 TableOptical+Others 2.3.1.3: Pre-operative Vision,0 0 2004-20080 0 ...... 531 1 0 0 1 0 2 0 TableTherapeutic+Others 2.3.2.1: Source of Donor0 Cornea0 Tissue,0 0 2004-20080 0 ...... 540 0 1 0 1 0 TableOthers 2.3.2.2: Donor Age Distribution,1 1 2004-2008...... 554 2 4 2 1 1 9 4 19 2 TableNo data 2.3.2.3: Preservation Media,0 02004-2008...... 56 0 0 1 1 0 0 1 0 2 0 Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008...... 57

Table 2.3.3.1: Types of Surgeries, 2004-2008...... 58

Table 2.3.3.2: Types of Combined Surgeries, 2004-2008 ...... 58

Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008...... 59

Table 2.3.3.4: Difference in Trephined Sizes of Recipient and Donor Corneas, 2004-

2008...... 60

Table 2.3.3.5: Suture Technique, 2004-2008...... 60

Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61

Table 2.4.2.1: Graft Survival, 2004-2008...... 62

Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63

Table 2.4.2.3: Graft Survival by Gender, 2004-2008 ...... 64

Table 2.4.2.4: Graft Survival by Age, 2004-2008 ...... 65

Table 2.4.2.5: Causes of Graft Failure...... 66

Table 2.4.3.1: Availability of Data on Post Corneal Transplant Unaided Vision ...... 67

Table 2.4.3.2: Unaided Visual Outcome After Cornea Transplant Surgery...... 68

Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69

Table 2.5.1: Post Transplant Complications...... 70

Table 2.5.2: Post Transplant Graft Rejection Types...... 70

List of Figures

Figure 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008...... 54

Figure 2.3.2.3: Preservation Media, 2004-2008 ...... 56

Figure 2.4.2.1: Graft Survival, 2004-2008...... 62

Figure 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008...... 63

Figure 2.4.2.3: Graft Survival by Gender, 2004-2008...... 64

Figure 2.4.2.4: Graft Survival by Age, 2004-2008...... 65

Figure 2.4.3.2: Unaided Visual Outcome After Corneal Transplant Surgery ...... 68

Figure 2.4.3.3: Cumulative Probability for Unaided Vision in Grafts...... 69

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Fifth Report of the Fifth ReportFifthNational Report of Transplantthe of the Registry 2008 CORNEAL TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008 CORNEAL TRANSPLANTATION

2.3 TRANSPLANT DATA, 2004-2008 2.0 INTRODUCTION 2.3.1 Recipient Data CornealRegrafts transplantation were performed surgery in 13% allows of restorcases ation (Table of 2.3.1.1). vision Ocular in patients co-morbidity with corneal was blindness.noted Cornealin 52% of transplantation the patients andin Malays cornealia vascularisation dates back to was the the 1970’s. most Today frequently it is performedencountered by ophthalmologists (Table 2.3.1.2). both in the government and private sectors with each centre contributing data towards the National Transplant Registry. From the data available 59% of the cases were legally blind (vision worse than 3/60) The prior National to corneal Transplant transp Registrylantation (NTR)(Table 2.3.1.3). was established in December 2003. The corneal transplant section of the NTR is a systematic centralised data collection of all corneal transplantations performed in the country. Table 2.3.1.1: No of Previous Grafts in Grafted Eye, 2004-2008 A total of 46 centres 2004 registered and2005 agreed to 2006 provide information2007 on retrospective2008 TOTAL and Year prospective corneal transplant(N=138) activities.(N=192) A total (N=177)of 75 contributing(N=196) surg eons(N=230) participated (N=933) in Graft the NTR – Corneal TransplantNo. % section.No. Participation% No. was% on a No.voluntary % basis.No. % No. % Number Retrospective0 data (from123 199889 to171 2003) 89 on corneal160 transpla90 161nt activities82 201 were 87 collected 816 87 to 1 11 8 15 8 15 8 30 15 21 10 92 10 identify2 the trend of corneal3 2transplant 2 surgery1 in1 the recent1 past.4 Prospective2 5 data2 (from15 the2 year 3 2004) on corneal0 transplant0 1 activities 1 involved1 1 gathering 0 information0 0 on0 all2 cornea0 transplants4 performed1 in Malaysia1 on0 two 0forms. 0The first0 form1 is the1 i) Corneal0 0 Transplant2 0 NotificationNot available Form (Form0 N-cds)0 0 which0 is completed0 0 at the0 time 0 of surgery1 0 and 1 gathers 0 informationMissing on the recipient,0 0 operative3 procedur2 0e and the0 donor.0 The0 second2 form1 is5 the 1ii) Corneal Transplant Outcome Form (Form O-cds) which is completed at the end of 12 months and annually thereafter. Follow-up only ceases upon failure of graft, death or loss to follow-upTable of 2.3.1.2: the patient. Ocular Co-morbidity, 2004-2008 2004 2005 2006 2007 2008 TOTAL Year (N=138) (N=192) (N=177) (N=196) (N=230) (N=933)

Ocular co-morbidity No. % No. % No. % No. % No. % No. %

Any ocular co-morbidity (a 88 64 103 54 82 46 89 45 126 55 488 52 to d below) a) Superficial corneal 44 50 48 47 44 54 53 60 70 56 259 53 vascularisation b) Deep corneal 42 48 39 38 22 27 28 31 31 25 162 33 vascularisation c) History of glaucoma 29 33 36 35 36 44 39 44 68 54 208 43 d) Current ocular 41 47 50 49 41 50 39 44 66 52 237 49 inflammation *Patient might have multiple ocular co-morbidities

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Table 2.3.1.3: Pre-operative Vision, 2004-2008 ListYear of Tables 2004 2005 2006 2007 2008 TOTAL Table 2.1.1: Number(N=138) of Corneal (N=192) Transplant (N=177)ation and Transplant(N=196) Rate(N=230) per million(N=933) Unaided VApopulation No. (pmp),% No.1998-2008 % ...... 46No. % No. % No. % No. % Table6/6 2.1.2: Types of3 Corn2 eal Transplant,0 0 1998-2008...... 471 1 1 1 1 0 6 1 Table6/9 2.2.1: Gender 1Di stribution,1 1 1998-2008...... 481 1 1 2 1 6 3 11 1 6/12 0 0 2 1 3 2 0 0 2 1 7 1 Table6/18 2.2.2: Ethnic Di0 stribution,0 1 1998-2008...... 481 0 0 2 1 1 0 4 0 Table6/24 2.2.3: Age Distribution3 2 of5 Corneal3 Transplant4 2 Recipient2 1 Patients,3 1998-2008...... 491 17 2 Table6/36 2.2.4: Primary4 Diagnosis,3 6 1998-2008...... 50 3 5 3 3 2 5 2 23 2 Table6/60 2.2.5: Indications7 of5 Corneal16 Transplant,8 17 2004-200810 11 ...... 516 14 6 65 7 Table5/60 2.3.1.1: No of1 Previous 1 Grafts0 in0 Grafted0 Eye,0 2004-20080 0 ...... 520 0 1 0 Table4/60 2.3.1.2: Ocular3 Co-morbidity,2 1 2004-20081 2 ...... 521 2 1 0 0 8 1 3/60 2 1 2 1 1 1 4 2 5 2 14 2 Table2/60 2.3.1.3: Pre-operative1 1 Vision,2 2004-20081 4 ...... 532 1 1 2 1 10 1 Table1/60 2.3.2.1: Source4 of Donor3 9Cornea 5 Tissue,7 2004-20084 2 ...... 541 1 0 23 2 TableCF 2.3.2.2: Donor47 Age 34 Distribution, 47 24 2004-2008...... 5545 25 43 22 40 17 222 24 TableHM 2.3.2.3: Preservation47 34 Media,46 2004-2008...... 5624 37 21 48 24 47 20 225 24 TablePL 2.3.2.4: Cause13 of Death9 in15 Corneal 8 Donors,12 7 2004-200817 9...... 57 20 9 77 8 TableNPL 2.3.3.1: Types2 of Surgeries,1 1 2004-2008...... 581 0 0 1 1 0 0 4 0 TableNo 2.3.3.2: data Types0 of Combined0 38 Surgeries,20 38 2004-200821 57 ...... 5829 83 36 216 23 Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008...... 59 Table 2.3.3.4: Difference in Trephined Sizes of Recipient and Donor Corneas, 2004- 2008...... 60 Table 2.3.3.5: Suture Technique, 2004-2008...... 60 Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61 Table 2.4.2.1: Graft Survival, 2004-2008...... 62 Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63 Table 2.4.2.3: Graft Survival by Gender, 2004-2008 ...... 64 Table 2.4.2.4: Graft Survival by Age, 2004-2008 ...... 65 Table 2.4.2.5: Causes of Graft Failure...... 66 Table 2.4.3.1: Availability of Data on Post Corneal Transplant Unaided Vision ...... 67 Table 2.4.3.2: Unaided Visual Outcome After Cornea Transplant Surgery...... 68 Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69 Table 2.5.1: Post Transplant Complications...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70

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Fifth Report of the Fifth ReportFifthNational Report of theTransplant of the Registry 2008 CORNEAL TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008 CORNEAL TRANSPLANTATION

2.3.2 Donor details 2.0 INTRODUCTIONEye Banks in the United States of America (USA) were the most frequent source of the corneal tissues (Table 2.3.2.1). The majority of donors were elderly patients with a Cornealmedian transplantation age of 57 years surgery (Table allows 2.3.2.2). restor Optisationol GS of was vision the comm in patientsonest corneal with cornealtissue blindness.storage Corneal medium transplantation used at 76% (Table in Malays 2.3.2.3).ia datesThe major back cause to the of 1970’s.death of Today the donors it is performedwere relatedby ophthalmologists to the cardiac bothor circulator in the governy systemment (31%) and privatefollowed sectors by malignancy with each (15%)centre contributing(Table 2.3.2.4).data towards the National Transplant Registry.

The National Transplant Registry (NTR) was established in December 2003. The corneal transplantTable section2.3.2.1: ofSource the NTRof Donor is aCornea systematic Tissue, centralised 2004-2008 data collection of all corneal transplantationsYear performed2004 in the country.2005 2006 2007 2008 TOTAL (N=138) (N=192) (N=177) (N=196) (N=230) (N=933) A totalSource of 46of centresNo. registered % andNo. agreed% to No. provide % informationNo. % on No. retrospective % No. and% prospectivedonor corneal transplant activities. A total of 75 contributing surgeons participated in Local 20 14 19 10 36 20 31 16 41 18 147 16 the NTRUSA – Corneal Transplant95 69 section. 133 Participation69 98 was 56on a voluntary114 58 basis. 150 65 590 64 Sri Lanka 22 16 38 20 41 23 51 26 36 16 188 20 RetrospectiveOthers data (from0 19980 to 2003)0 on0 corneal2 transpla1 nt0 activities0 were2 collected1 4 0 to identifyNo datathe trend of corneal1 transplant1 2 surgery1 in the0 recent0 past.0 Prospective0 1 data0 (from4 the0 year 2004) on corneal transplant activities involved gathering information on all cornea transplantsIf Local, performed ethnic group: in Malaysia on two forms. The first form is the i) Corneal Transplant NotificationMalay Form (Form0 N-cds)0 which4 21is completed1 3 at the 5 time of16 surgery0 0 and 10 gathers 7 Chinese 14 70 8 42 12 33 16 52 22 54 72 49 informationIndian on the recipient,5 25operative 7 procedur37 e23 and the64 donor.4 The 13second 9 form22 is48 the 33ii) CornealOthers Transplant Outcome0 0 Form0 (Form0 O-cds)0 which0 is4 completed13 at6 the15 end10 of 127 monthsNo anddata annually thereafter.1 5 Follow-up0 0only ceases0 upon0 failure2 of 6graft, 4 death10 or 7loss 5to follow-up* In the of year the 2004patient. there were a total of 184 corneal transplants performed but complete data set was only received for 138 patients

Figure 2.3.2.1: Source of Donor Corneal Tissue, 2004-2008 Local USA Sri Lanka

Percent Percent 30

0 2004 2005 2006 2007 2008 Year

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ListTable of Tables 2.3.2.2: Donor Age Distribution, 2004-2008 TableYear 2.1.1: Number of2004 Corneal Transplant2005 ation and2006 Transplant 2007 Rate per million2008 TOTAL population(N=138) (pmp), 1998-2008(N=192)...... 46 (N=177) (N=196) (N=230) (N=933) Age group Table 2.1.2: Types ofNo. Corn eal% Transplant,No. % 1998-2008...... 47 No. % No. % No. % No. % Table(years) 2.2.1: Gender Distribution, 1998-2008...... 48 Table0-9 2.2.2: Ethnic Di2stribution, 1 1998-2008...... 483 2 2 1 2 1 7 3 16 2 10-19 6 4 4 2 9 5 5 3 7 3 31 3 Table20-39 2.2.3: Age Distribution11 8 of Corneal7 Transplant4 11 Recipient6 13 Patients, 7 1998-2008...... 4919 8 61 7 Table40-59 2.2.4: Primary Diagnosis,52 38 1998-2008...... 5089 46 81 46 83 42 79 34 384 41 Table60 2.2.5: Indications67 of Corneal49 89 Transplant, 46 2004-200874 42 ...... 5193 47 118 51 441 47 TableMean 2.3.1.1: No of Previous56 Grafts in58 Grafted Eye,56 2004-2008 ...... 5257 56 57 TableSD 2.3.1.2: Ocular Co-morbidity,15 2004-200814 ...... 5216 14 17 15 TableMedian 2.3.1.3: Pre-operative59 Vision, 2004-200858 ...... 5356 59 60 59 Minimum 8 3 6 4 1 1 TableMaximum 2.3.2.1: Source of 78Donor Cornea79 Tissue, 2004-200878 ...... 5478 76 79 Table 2.3.2.2: Donor Age Distribution, 2004-2008...... 55 Table 2.3.2.3: Preservation Media, 2004-2008...... 56 Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008...... 57 Table 2.3.3.1: Types of Surgeries, 2004-2008...... 58 Table 2.3.3.2: Types of Combined Surgeries, 2004-2008 ...... 58 Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008...... 59 Table 2.3.3.4: Difference in Trephined Sizes of Recipient and Donor Corneas, 2004- 2008...... 60 Table 2.3.3.5: Suture Technique, 2004-2008...... 60 Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61 Table 2.4.2.1: Graft Survival, 2004-2008...... 62 Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63 Table 2.4.2.3: Graft Survival by Gender, 2004-2008 ...... 64 Table 2.4.2.4: Graft Survival by Age, 2004-2008 ...... 65 Table 2.4.2.5: Causes of Graft Failure...... 66 Table 2.4.3.1: Availability of Data on Post Corneal Transplant Unaided Vision ...... 67 Table 2.4.3.2: Unaided Visual Outcome After Cornea Transplant Surgery...... 68 Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69 Table 2.5.1: Post Transplant Complications...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70

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Table 2.3.2.3: Preservation Media, 2004-2008 2.0 INTRODUCTION 2004 2005 2006 2007 2008 TOTAL Year (N=138) (N=192) (N=177) (N=196) (N=230) (N=933) Preservation Corneal transplantationNo. surgery% allowsNo. % restor ationNo. of% visionNo. in % patients No. % with No. corneal % blindness.media Corneal transplantation in Malaysia dates back to the 1970’s. Today it is performedOptisol GSby ophthalmologists110 80 both147 in the76 govern 129ment 72and private134 sectors68 189 with 82 each709 centre76 contributingMK Medium data towards22 the Nati16 onal37 Transplant19 40Registry. 23 51 26 34 15 184 19 Moist Chamber 4 3 3 2 7 4 8 4 4 2 26 3 The Others National Transplant0 Registry0 (NTR)1 wa1 s established0 0 in December3 2 2003.1 0 The 5 corneal1 transplantNo data section of the2 NTR1 is a4 systematic2 1 centralised 1 data0 collection0 2 of1 all 9 corneal1 *Others (specify) Eusol-C transplantations performed in the country.

A total of 46 centres registered and agreed to provide information on retrospective and Figure 2.3.2.3: Preservation Media, 2004-2008 prospective corneal transplant activities. A total of 75 contributing surgeons participated in Optisol MK Medium the NTR – Corneal TransplantMoist Chamber section. Participation was on a voluntary basis.

Retrospective80 data (from 1998 to 2003) on corneal transplant activities were collected to identify the trend of corneal transplant surgery in the recent past. Prospective data (from the 70 year 2004) on corneal transplant activities involved gathering information on all cornea transplants performed in Malaysia on two forms. The first form is the i) Corneal Transplant 60 Notification Form (Form N-cds) which is completed at the time of surgery and gathers information on the recipient, operative procedure and the donor. The second form is the ii) 50 Corneal Transplant Outcome Form (Form O-cds) which is completed at the end of 12 months and annually thereafter. Follow-up only ceases upon failure of graft, death or loss to

Percent Percent 40 follow-up of the patient. 30

0 2004 2005 2006 2007 Figure2008 2.3.2.3: Preservation Media, 2004-2008 Year

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FifthFifth Report Report of theof the Fifth Report of the NationalNational Transplant Transplant Registry Registry 2008 2008 CORNEALCORNEAL TRANSPLANTATION TRANSPLANTATION National Transplant Registry 2008

Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008 ListYear of Tables 2004 2005 2006 2007 2008 TOTAL Table 2.1.1: Number of(N=138) Corneal Transplant(N=192) ation(N=177) and Transplant (N=196) Rate per(N=230) million (N=933) Cause of deathpopulation No. (pmp), % 1998-2008No. %...... 46 No. % No. % No. % No. % Cardiac / Table 2.1.2: Types of Corn47 eal34 Transplant, 49 26 1998-2008...... 4759 33 75 38 61 27 291 31 Circulatory System TableCerebrovascular 2.2.1: Gender Distribution, 1998-2008...... 48 17 12 25 13 11 6 23 12 35 15 111 12 TableSystem 2.2.2: Ethnic Distribution, 1998-2008...... 48 TableMalignancy 2.2.3: Age Distribution19 14 of Corneal31 16 Transplant 25 14Recipient 26 Patients,13 41 1998-2008...... 49 18 142 15 TableTrauma 2.2.4: / Accident Primary Diagnosis,20 15 1998-2008...... 5013 7 19 11 24 12 21 9 97 10 TableRespiratory 2.2.5: IndicationsSystem 15 of Corneal11 8Transplant, 4 8 2004-2008 5 13...... 51 7 10 4 54 6 TableOthers 2.3.1.1: No of Previous17 12 Grafts 21 in Grafted11 27 Eye, 15 2004-2008 32 16...... 52 58 25 155 17 TableNo data2.3.1.2: Ocular Co-morbidity,3 2 45 2004-200823 28...... 52 16 3 2 4 2 83 9 Table 2.3.1.3: Pre-operative Vision, 2004-2008...... 53 Table 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008 ...... 54 Table 2.3.2.2: Donor Age Distribution, 2004-2008...... 55 Table 2.3.2.3: Preservation Media, 2004-2008...... 56 Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008...... 57 Table 2.3.3.1: Types of Surgeries, 2004-2008...... 58 Table 2.3.3.2: Types of Combined Surgeries, 2004-2008 ...... 58 Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008...... 59 Table 2.3.3.4: Difference in Trephined Sizes of Recipient and Donor Corneas, 2004- 2008...... 60 Table 2.3.3.5: Suture Technique, 2004-2008...... 60 Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61 Table 2.4.2.1: Graft Survival, 2004-2008...... 62 Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63 Table 2.4.2.3: Graft Survival by Gender, 2004-2008 ...... 64 Table 2.4.2.4: Graft Survival by Age, 2004-2008 ...... 65 Table 2.4.2.5: Causes of Graft Failure...... 66 Table 2.4.3.1: Availability of Data on Post Corneal Transplant Unaided Vision ...... 67 Table 2.4.3.2: Unaided Visual Outcome After Cornea Transplant Surgery...... 68 Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69 Table 2.5.1: Post Transplant Complications...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70

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2.3.3 Transplant Practices 2.0 INTRODUCTIONPenetrating Keratoplasty (PK) was the commonest type of surgery performed (86%) (Table 2.3.3.1). Corneal transplantation was performed in combination with other Cornealsurgical transplantation procedures in surgery 19% of allows cases. Catara restorationct extraction, of vision with in or patients without with intraocular corneal blindness.lens implantation Corneal transplantation (IOL), was the commone in Malaysstia combined dates back procedure to the (Table 1970’s. 2.3.3.2). Today it is performed by ophthalmologists both in the government and private sectors with each centre contributingThe recipient data towardsgraft size the ranged National from Transplant 2mm to Registry.10mm, with the median recipient cornea graft size being 7.5mm.(Table 2.3.3.3). The majority of cases had the donor tissue over- The sized National by 0.5mm Transplant (Table Registry 2.3.3.4). (NTR) The wacommonests established suturing in December techniqu e 2003. was interrupted The corneal transplantsutures section(Table 2.3.3.5). of the NTR is a systematic centralised data collection of all corneal transplantations performed in the country.

A totalTable of 2.3.3.1: 46 centres Types registered of Surgeries, and 2004-2008 agreed to provide information on retrospective and prospectiveYear corneal transplant activities.2004 A 2005tota l of 752006 contributing 2007 surgeons2008 participated TOTAL in the NTR – Corneal Transplant section.(N=138) Participation (N=192) was(N=177) on a voluntary(N=196) basis.(N=230) (N=933) Type of surgery No. % No. % No. % No. % No. % No. % RetrospectivePenetrating Keratoplastydata (from 1998120 to 2003)87 173 on corneal90 153 transpla 86 nt175 activities 89 188 were 82 collected809 87 to identifyLamellar the Keratoplastytrend of corneal transplant10 7 surgery13 in7 the16 recent 9 past.7 Prospective4 21 data9 (from67 7the Patch Graft for Corneal 2 1 3 2 5 3 10 5 12 5 32 3 yearPatch 2004) Graft on for corneal Scleral transplant0 activities0 1 involved1 1 gathering1 1 information1 2 on1 all5 cornea1 transplantsCornea Scleral performed Keratoplasty in Malaysia 6 on two4 forms.2 1 The 2first form1 3is the2 i) Corneal4 2 Transplant17 2 NotificationEndothelial Formkeratoplasty (Form N-cds)0 which0 0is completed0 0 at0 the 0 time 0 of surgery3 1 and3 gathers0 information* In the year on 2004 the thererecipient, were a operativetotal of 184 procedurcorneal transplantse and the performe donor.d but The complete second data form set was is theonly ii) Corneal received Transplant for 138 patients Outcome Form (Form O-cds) which is completed at the end of 12 months and annually thereafter. Follow-up only ceases upon failure of graft, death or loss to follow-up of the patient. Table 2.3.3.2: Types of Combined Surgeries, 2004-2008 2004 2005 2006 2007 2008 TOTAL (N=138) (N=192) (N=177) (N=196) (N=230) (N=933) Combined surgeries No. % No. % No. % No. % No. % No. % No. of patients with corneal transplant surgery combined with 31 22 27 14 41 23 35 18 46 20 180 19 another surgical procedure (a) Glaucoma surgery 2 6 3 11 1 2 0 0 3 7 9 5 (b) Cataract Extraction 16 52 13 48 21 51 13 37 17 37 80 44 (c ) IOL 14 45 10 37 24 59 19 54 23 50 90 50 (d) Cataract extraction and IOL 10 32 8 30 15 37 10 29 16 35 59 33 (e) Retinal Surgery + Internal 1 3 1 4 2 5 4 11 10 22 18 10 Tamponade (f) Anterior vitrectomy 9 29 3 11 4 10 10 29 6 13 32 18 (g) Others 5 16 8 30 8 20 16 46 14 30 51 28 *Patients may have more than one combined surgery

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Fifth Report of the National TransplantFifth ReportRegistry of 2008the Fifth Report of the CORNEAL TRANSPLANTATION National Transplant Registry 2008 CORNEAL TRANSPLANTATION National Transplant Registry 2008

Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008 ListYear of Tables 2004 2005 2006 2007 2008 TOTAL Table 2.1.1: Number(N=138) of Corneal (N=192) Transplant ation(N=177) and Transplant(N=196) Rate(N=230) per million (N=933) Graft size, mmpopulation No. (pmp),% No. 1998-2008 % ...... 46No. % No. % No. % No. % Table2 2.1.2: Types 1of Corn1 eal Transplant,1 1 1998-2008...... 472 1 1 1 0 0 5 1 Table3 2.2.1: Gender0 Distribution,0 1 1998-2008...... 481 2 1 1 1 1 0 5 1 4 1 1 2 1 1 1 5 3 2 1 11 1 Table5 2.2.2: Ethnic0 Di stribution,0 0 1998-2008...... 480 0 0 1 1 1 0 2 0 Table5.5 2.2.3: Age Distribution1 1 of0 Corneal0 Transplant0 0 Recipient0 0 Patients, 0 1998-2008...... 490 1 0 Table6 2.2.4: Primary3 Diagnosis,2 0 1998-2008...... 500 5 3 4 2 4 2 16 2 Table6.25 2.2.5: Indications0 of0 Corneal1 Transplant,1 0 2004-20080 0 ...... 510 0 0 1 0 Table6.5 2.3.1.1: No of2 Previous1 Grafts5 in3 Grafted4 Eye,2 2004-20088 4 ...... 527 3 26 3 Table6.7 2.3.1.2: Ocular0 Co-morbidity,0 0 2004-20080 0 ...... 520 0 0 0 0 0 0 6.75 1 1 3 2 2 1 1 1 1 0 8 1 Table7 2.3.1.3: Pre-operative25 18 Vision,36 2004-200819 25 ...... 5314 29 15 37 16 152 16 Table7.2 2.3.2.1: Source0 of Donor0 0 Cornea 0 Tissue,0 2004-20080 0 ...... 540 0 0 0 0 Table7.25 2.3.2.2: Donor10 Age7 Distribution,10 5 2004-2008...... 5514 8 5 3 5 2 44 5 Table7.5 2.3.2.3: Preservation36 26 Media,18 2004-2008...... 569 26 15 37 19 50 22 167 18 Table7.75 2.3.2.4: Cause10 of Death7 in11 Corneal6 Donors,6 32004-2008 12 ...... 576 14 6 53 6 Table8 2.3.3.1: Types19 of Surgeries,14 7 2004-2008...... 584 13 7 19 10 26 11 84 9 Table8.15 2.3.3.2: Types0 of Combined0 0 Surgeries,0 0 2004-20080 0...... 58 0 0 0 0 0 8.25 4 3 4 2 5 3 4 2 4 2 21 2 Table8.5 2.3.3.3: Recipient6 Corn4 ea6 Trephine3 Size,2 2004-20081 11 ...... 596 10 4 35 4 Table8.75 2.3.3.4: Difference0 0 in Trephined1 1 Sizes0 of Recipient0 0 and 0Donor 0 Corneas,0 2004-1 0 8.8 2008...... 600 0 0 0 0 0 0 0 0 0 0 0 Table9 2.3.3.5: Suture8 Technique,6 3 2004-20082 1...... 60 1 4 2 3 1 19 2 Table9.5 2.4.1: Stock 0and Flow0 - Gr2 aft Status1 (Whole0 0 Database)0 ...... 610 1 0 3 0 Table10 2.4.2.1: Graft1 Survival,1 2004-20080 0 ...... 620 0 0 0 2 1 3 0 Table11 2.4.2.2: Graft0 Survival0 by0 Optical0 and0 Non-optical0 0 Indication,0 12004-2008 0 ...... 631 0 12 0 0 0 0 0 0 0 0 1 0 1 0 TableNo data 2.4.2.3: Graft10 Survival7 by81 Gender, 42 2004-200869 39 ...... 6454 28 57 25 271 29 TableMean 2.4.2.4: Graft Survival7.5 by Age,7.3 2004-20087.2 ...... 657.3 7.5 7.4 TableSD 2.4.2.5: Causes0.9 of Graft Failure1 ...... 661.1 1.1 0.9 1 TableMedian 2.4.3.1: Availability7.5 of Data7.3 on Post Corneal7.3 Transplant7.5 Unaided7.5 Vision ...... 677.5 TableMinimum 2.4.3.2: Unaided2 Visual Outcom2 e After Cornea2 Transplant2 Surgery3 ...... 682 TableMaximum 2.4.3.3: Unaided10 Vision for9.5 Optical and 9Non Optical 9Cases ...... 6912 12 Table 2.5.1: Post Transplant Complications...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70

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Fifth Report of the Fifth ReportFifthNational Report of the Transplant of the Registry 2008 CORNEAL TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008 CORNEAL TRANSPLANTATION

Table 2.3.3.4: Difference in Trephined Sizes of Recipient and Donor Corneas, 2004- 2.0 INTRODUCTION2008 2004 2005 2006 2007 2008 TOTAL Corneal transplantation surgery(N=138) allows (N=192) restor ation(N=177) of vision (N=196) in patients(N=230) with (N=933) corneal Difference in Graft size, blindness. Corneal transplantationNo. % in No. Malays %ia datesNo. % back No. to the% 1970’s.No. % Today No. it % is performedmm by ophthalmologists both in the government and private sectors with each centre contributingSame Size data towards the Nati9 onal7 Transplant8 4 Registry.8 5 12 6 19 8 56 6 0.2 0 0 0 0 0 0 0 0 2 1 2 0 The National0.25 Transplant Registry29 21 (NTR) 19 was10 established 30 17 in 27 December 14 27 2003. 12 The 132 corneal 14 transplant0.5 section of the NTR87 is 63 a systematic84 44 centralised67 38 data95 collection48 116 of50 all449 corneal 48 transplantations0.55 performed in the0 country.0 0 0 0 0 0 0 1 0 1 0

0.6 0 0 0 0 0 0 0 0 1 0 1 0 A total of 46 centres registered and agreed to provide information on retrospective and 0.75 1 1 0 0 1 1 1 1 2 1 5 1 prospective corneal transplant activities. A total of 75 contributing surgeons participated in 1 1 0 0 1 1 4 2 2 1 8 1 the NTR1 – Corneal Transplant section. Participation was on a voluntary basis. 1.5 0 0 0 0 0 0 0 0 1 0 1 0 Retrospective2 data (from 19981 to 2003)1 0 on corneal0 0 transpla0 nt0 activities0 0 were0 collected1 0 to identifyNot the Available trend of corneal transplant10 7 surgery81 42 in the70 recent 40 past.57 Prospective29 59 data26 (from277 the30 year 2004) on corneal transplant activities involved gathering information on all cornea transplants performed in Malaysia on two forms. The first form is the i) Corneal Transplant NotificationTable 2.3.3.5: Form Suture (Form Technique, N-cds) which 2004-2008 is completed at the time of surgery and gathers informationYear on the recipient, 2004operative procedur2005 e and2006 the donor.2007 The second2008 form isTOTAL the ii) Corneal Transplant Outcome(N=138) Form (N=192)(Form O-cds)(N=177) which (N=196) is completed (N=230) at the end(N=933) of 12 monthsSuture and Techniqueannually thereafter. No. Follow-up% No. only% ceasesNo. upon% failureNo. %of graft,No. death% orNo. loss %to Interrupted only 132 96 139 72 124 70 138 70 170 74 703 75 follow-upContinuous of the only patient. 0 0 0 0 5 3 1 1 6 3 12 1 Combined 6 4 18 10 18 10 12 6 10 4 64 7 No data 0 0 35 18 30 17 45 23 44 19 154 17

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2.4 CORNEAL TRANSPLANT OUTCOME 2004-2008 List of Tables TableTable 2.1.1: 2.4.1: Number Stock and of CornealFlow - Gr Transplantaft Statusation (Whole and Database) Transplant Rate per million population (pmp), 1998-2008 ...... 46Optical Non optical Total Table 2.1.2: Types of Corneal Transplant, 1998-2008...... 47No. % No. % No. % TableNumber 2.2.1: registered Gender Distribution, 1998-2008...... 48 699 71 280 29 979 100 TableNumber 2.2.2: followed Ethnic Distribution, 1998-2008...... 48Total 312 159 471 Table 2.2.3: Age Distribution of Corneal1 year Transplant 197 Recipient63 126Patients, 79 1998-2008...... 49 323 69 Table 2.2.4: Primary Diagnosis, 1998-2008...... 502 year 67 22 23 14 90 19 Table 2.2.5: Indications of Corneal Transplant,3 year 2004-200841 13 ...... 516 4 47 10 Table 2.3.1.1: No of Previous Grafts in4 yearGrafted Eye,7 2004-20082 4...... 52 3 11 2 Table 2.3.1.2: Ocular Co-morbidity, 2004-2008 ...... 52 TableGraft 2.3.1.3:status Pre-operative Vision, 2004-2008Total 312...... 53 159 471 Table-Surviving 2.3.2.1: graft Source of Donor Cornea Tissue, 2492004-2008 80 ...... 5487 55 336 71 Table-Failed 2.3.2.2: graft Donor Age Distribution, 2004-2008...... 5563 20 72 45 135 29

Table 2.3.2.3: Preservation Media, 2004-2008...... 56 Recipient status Total 699 280 979 Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008...... 57 -Recipient with complete follow up 143 20.46 103 36.78 246 25.13 Table-Recipient 2.3.3.1: deaths Types of Surgeries, 2004-2008...... 58 3 0.43 1 0.36 4 0.41 Table-Recipient 2.3.3.2: loss -Types followed of Combined Surgeries, 2004-2008156 22.32...... 58 54 19.29 210 21.45 Table-Recipient 2.3.3.3: loss -Recipient not followed Corn ea Trephine Size, 2342004-2008 33.47...... 59 58 20.71 292 29.82 Table-Graft 2.3.3.4:not yet followed Difference in Trephined Sizes of Recipient and Donor Corneas, 2004- 163 23.32 64 22.86 227 23.19 (Transplant duration2008...... 60 less than 1 year) Table 2.3.3.5: Suture Technique, 2004-2008...... 60 Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61 Table 2.4.2.1: Graft Survival, 2004-2008...... 62 Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63 Table 2.4.2.3: Graft Survival by Gender, 2004-2008 ...... 64 Table 2.4.2.4: Graft Survival by Age, 2004-2008 ...... 65 Table 2.4.2.5: Causes of Graft Failure...... 66 Table 2.4.3.1: Availability of Data on Post Corneal Transplant Unaided Vision ...... 67 Table 2.4.3.2: Unaided Visual Outcome After Cornea Transplant Surgery...... 68 Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69 Table 2.5.1: Post Transplant Complications...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70

61 43

2.4.2 Outcome – Graft Survival 2004-2008 2.0 INTRODUCTIONGraft survival for both optical and non-optical indications at 12 months was 77.3% but this declined to 63.2% at 36 months (Table 2.4.2.1). The cases were grouped into two Cornealgroups transplantation based on the surgery indication allows for surgery restoration – i) of Optical vision and in ii patients) Non-Optical. with corneal Graft blindness.survival Corneal was 87% transplantation at 12 months in the Malays opticalia datesgroup and back 58% to in the the 1970’s. non-optical Today group. it is performedThis declinedby ophthalmologists to 71% at 36 both months in the in govern the opticalment and group private and 48%sectors in with the non-opticaleach centre contributinggroup (Table data towards 2.4.2.2). the Gender National did Transplant not influence Registry. graft survival (Table 2.4.2.3). Poorer graft survival was observed in children less than 10 years of age (Table 2.4.2.4). The Primary National graft Transplant failure Registrywas the commonest (NTR) wa scause established of graft in failure. December Graft 2003.failure The as a cornealresult transplantof infection section was of present the NTR in 26 is patients a systematic (19%), centralisedthe indication data for collectionsurgery was of non all optical corneal transplantationsin 20 patients perf ormed with 12 in the of thesecountry. patients having infective keratitis with or without perforation as the diagnosis at the time of notification (Table 2.4.2.5). A total of 46 centres registered and agreed to provide information on retrospective and prospective corneal transplant activities. A total of 75 contributing surgeons participated in the NTRTable – Corneal2.4.2.1: GraftTransplant Survival, section. 2004-2008 Participation was on a voluntary basis. Interval (months) No. % success SE Retrospective0 data (from 1998 to 471 2003) on corneal transpla100 nt activities were collected- to identify12 the trend of corneal transplant366 surgery in the recent77.3 past. Prospective data2 (from the year 24 2004) on corneal transplant activities148 involved gathering69.9 information on2 all cornea transplants36 performed in Malaysia on58 two forms. The first 63.2form is the i) Corneal Transplant3 48 11 50.7 7 Notification Form (Form N-cds) which is completed at the time of surgery and gathers information on the recipient, operative procedure and the donor. The second form is the ii)

Corneal Transplant Outcome Form (Form O-cds) which is completed at the end of 12 Figure 2.4.2.1: Graft Survival, 2004-2008 months and annually thereafter. Follow-up only ceases upon failure of graft, death or loss to follow-up of the patient. 1.00

0.80

0.60

survival Cumulative 0.40

0.20

0.00 0 12 24 36 48 Duration in months

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Fifth Report of the Fifth Report of the National TransplantFifth RegistryReport of 2008 the CORNEAL TRANSPLANTATION National Transplant Registry 2008 CORNEAL TRANSPLANTATION National Transplant Registry 2008

Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 List of Tables Optical Non-Optical TableInterval 2.1.1: (months) Number of CornealNo. Transplant % successation and SETransplant No. Rate per% success million SE 0 population (pmp), 1998-2008312 ...... 46100 - 159 100 - Table12 2.1.2: Types of Corneal Transplant,271 86.8 1998-2008...... 47 2 95 58.5 4 Table24 2.2.1: Gender Distribution,115 1998-2008...... 48 79.1 3 33 51.9 4 Table36 2.2.2: Ethnic Distribution,48 1998-2008...... 48 71.2 4 10 47.8 6 48 7 51.4 10 4 47.8 6 Table 2.2.3: Age Distribution of Corneal Transplant Recipient Patients, 1998-2008...... 49

Table 2.2.4: Primary Diagnosis, 1998-2008...... 50

Table 2.2.5: Indications of Corneal Transplant, 2004-2008 ...... 51 Figure 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 Table 2.3.1.1: No of Previous Grafts in Grafted Eye, 2004-2008 ...... 52 Table 2.3.1.2: Ocular Co-morbidity, 2004-2008 ...... 52 1.00 Table 2.3.1.3: Pre-operative Vision, 2004-2008...... 53 Table 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008 ...... 54 Table 2.3.2.2: Donor Age Distribution, 2004-2008...... 55 Table 2.3.2.3: Preservation Media, 2004-2008...... 56 0.75 Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008...... 57Optical Table 2.3.3.1: Types of Surgeries, 2004-2008...... 58 Table 2.3.3.2: Types of Combined Surgeries, 2004-2008 ...... 58 Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008...... 59Non-Optical Table 2.3.3.4:0.50 Difference in Trephined Sizes of Recipient and Donor Corneas, 2004-

Cumulative survival Cumulative 2008...... 60 Table 2.3.3.5: Suture Technique, 2004-2008...... 60 Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61 Table 2.4.2.1:0.25 Graft Survival, 2004-2008...... 62 Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63 Table 2.4.2.3: Graft Survival by Gender, 2004-2008 ...... 64 Table 2.4.2.4: Graft Survival by Age, 2004-2008 ...... 65 Table 2.4.2.5:0.00 Causes of Graft Failure...... 66 Table 2.4.3.1:0 Availability of 12Data on Post Corneal24 Transplant Unaided36 Vision ...... 6748 Table 2.4.3.2: Unaided Visual OutcomDuratione After Corneain months Transplant Surgery...... 68 Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69 Table 2.5.1: Post Transplant Complications...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70

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Fifth Report of the Fifth ReportFifthNational Report of the Transplant of the Registry 2008 CORNEAL TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008 CORNEAL TRANSPLANTATION

Table 2.4.2.3: Graft Survival by Gender, 2004-2008 2.0 INTRODUCTION Male Female Interval (months) No. % success SE No. % success SE Corneal0 transplantation surgery allows298 restor100ation of -vision 173 in patients100 with cornealblindness.12 Corneal transplantation 228 in Malays76.2ia dates back2 to 138 the 1970’s.79.1 Today it3 is performed24 by ophthalmologists both85 in the govern69.0 ment and3 private63 sectors with71.4 each centre4 36 36 61.5 4 22 66.3 5 contributing48 data towards the National9 Transplant56.8 Registry. 6 2 33.2 17

The National Transplant Registry (NTR) was established in December 2003. The corneal transplantFigure section 2.4.2.3: of Graft the NTRSurvival is by a systematicGender, 2004-2008 centralised data collection of all corneal transplantations performed in the country. 1.00 A total of 46 centres registered and agreed to provide information on retrospective and prospective corneal transplant activities. A total of 75 contributing surgeons participated in the NTR – Corneal Transplant section. Participation was on a voluntary basis.

0.75 Retrospective data (from 1998 to 2003) on corneal transplant activitiesFemale were collected to identify the trend of corneal transplant surgery in the recent past. Prospective data (from the year 2004) on corneal transplant activities involved gathering information on all cornea transplants performed in Malaysia on two forms. The first form is the i) Corneal Transplant 0.50 Male Notification Form (Form N-cds) which is completed at the time of surgery and gathers information survival Cumulative on the recipient, operative procedure and the donor. The second form is the ii) Corneal Transplant Outcome Form (Form O-cds) which is completed at the end of 12 months and annually thereafter. Follow-up only ceases upon failure of graft, death or loss to follow-up of 0.25the patient.

0.00 0 12 24 36 48 Duration in months

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Fifth Report of the National TransplantFifth Report Registry of the2008 Fifth Report of the CORNEAL TRANSPLANTATION National Transplant Registry 2008 CORNEAL TRANSPLANTATION National Transplant Registry 2008

Table 2.4.2.4: Graft Survival by Age, 2004-2008 List of Tables 0-9 10-19 TableInterval 2.1.1: (months) Number of CornealNo. Transplant % successation and TransplantSE No. Rate per% successmillion SE 0 population (pmp), 1998-20089 ...... 46100 - 21 100 - Table12 2.1.2: Types of Corneal Transplant,8 88.91998-2008...... 47 10 18 85.7 8 Table24 2.2.1: Gender Distribution,3 1998-2008...... 4844.4 23 14 85.7 8 36 3 44.4 23 10 85.7 8 Table48 2.2.2: Ethnic Distribution, 11998-2008...... 48 44.4 23 1 . . Table 2.2.3: Age Distribution of Corneal Transplant20-39 Recipient Patients, 1998-2008...... 4940 TableInterval 2.2.4: (months) Primary Diagnosis,No. 1998-2008...... 50 % success SE No. % success SE Table0 2.2.5: Indications of Corneal28 Transplant,100 2004-2008- ...... 51413 100 - Table12 2.3.1.1: No of Previous Grafts22 in Grafted78.6 Eye, 2004-20088 318...... 52 76.5 2 Table24 2.3.1.2: Ocular Co-morbidity,5 2004-200878.6 ...... 528 126 69.0 3 Table36 2.3.1.3: Pre-operative Vision,3 2004-200878.6 ...... 538 44 60.9 4 48 2 78.6 8 9 46.5 8 Table 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008 ...... 54

Table 2.3.2.2: Donor Age Distribution, 2004-2008...... 55

Table 2.3.2.3: Preservation Media, 2004-2008...... 56 Figure 2.4.2.4: Graft Survival by Age, 2004-2008 Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008...... 57 Table 2.3.3.1: Types of Surgeries, 2004-2008...... 58 1.00 Table 2.3.3.2: Types of Combined Surgeries, 2004-2008 ...... 58 Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008...... 5910-19 years Table 2.3.3.4: Difference in Trephined Sizes of Recipient and Donor Corneas, 2004- 2008...... 60 0.75 20-29 years Table 2.3.3.5: Suture Technique, 2004-2008...... 60 Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61 Table 2.4.2.1: Graft Survival, 2004-2008...... 6240 years Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63 Table 2.4.2.3:0.50 Graft Survival by Gender, 2004-2008 ...... 64

Cumulative survival Cumulative Table 2.4.2.4: Graft Survival by Age, 2004-2008 ...... 650-9 years Table 2.4.2.5: Causes of Graft Failure...... 66 Table 2.4.3.1: Availability of Data on Post Corneal Transplant Unaided Vision ...... 67 Table 2.4.3.2:0.25 Unaided Visual Outcome After Cornea Transplant Surgery...... 68 Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69 Table 2.5.1: Post Transplant Complications...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70 0.00 0 12 24 36 48 List of Figures Duration in months Figure 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008...... 54 Figure 2.3.2.3: Preservation Media, 2004-2008 ...... 56 Figure 2.4.2.1: Graft Survival, 2004-2008...... 62 Figure 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008...... 63 Figure 2.4.2.3: Graft Survival by Gender, 2004-2008...... 64 Figure 2.4.2.4: Graft Survival by Age, 2004-2008...... 65 Figure 2.4.3.2: Unaided Visual Outcome After Corneal Transplant Surgery ...... 68 Figure 2.4.3.3: Cumulative Probability for Unaided Vision in Grafts...... 69

65 43

Table 2.4.2.5: Causes of Graft Failure 2.0 INTRODUCTION Total (N=135) Corneal transplantation surgery allows restoration of vision in patientsNo. with corneal% blindness.Graft Failure Corneal transplantation in Malaysia dates back to the 1970’s.135 Today 29 it is performed by ophthalmologistsPrimary graft both failure in or the Primar governy Endothelialment and decompensation private sectors with34 each centre25 Cause of Failure Recurrence of primary disease 12 9 contributing data towardsLate Endothelialthe National decompensation Transplant Registry. 23 17 Glaucoma 28 21 The National TransplantInfection Registry (NTR) was established in December 2003.26 The corneal19 transplant section of Graft the rejection NTR is a systematic centralised data collection28 of all corneal21 transplantations performedOthers in the country. 31 23 No data 7 5 *Each patient may have more than one cause of graft failure A total 77 ofpatients 46 centreshad 1 cause registered and agreed to provide information on retrospective and prospective 34 patients corneal had 2 transplantcauses activities. A total of 75 contributing surgeons participated in the NTR 3 patients – Corneal had 3 Transplantcauses section. Participation was on a voluntary basis. 1 patient had 4 causes Retrospective data (from 1998 to 2003) on corneal transplant activities were collected to identify the trend of corneal transplant surgery in the recent past. Prospective data (from the year 2004) on corneal transplant activities involved gathering information on all cornea transplants performed in Malaysia on two forms. The first form is the i) Corneal Transplant Notification Form (Form N-cds) which is completed at the time of surgery and gathers information on the recipient, operative procedure and the donor. The second form is the ii) Corneal Transplant Outcome Form (Form O-cds) which is completed at the end of 12 months and annually thereafter. Follow-up only ceases upon failure of graft, death or loss to follow-up of the patient.

66 44

2.4.3 Visual Outcome ListVisual of Tables outcome of corneal transplants was analysed in cases where post corneal Tabletransplant 2.1.1: Numberunaided ofvision Corneal was Transplant available. ationData andon postTransplant corneal Rate transp perlant million best corrected vision waspopulation only available (pmp), in 1998-2008 a limited ...... 46number of the cases (Table 2.4.3.1). Forty nine Tablepercent 2.1.2: of Types optical of Corn and 44%eal Transplant, of non-optical 1998-2008...... 47 cases had improved unaided vision after Tablesurgery 2.2.1: (Table Gender 2.4.3.2). Distribution, Majority 1998-2008...... 48 of surviving optical grafts had an unaided vision of Table6/24-6/60, 2.2.2: Ethnic whereas Di stribution,the majority 1998-2008...... 48 in the non optical group had an unaided vision of less Tablethan 2.2.3: 6/60 Age(Table2.4.3.3) Distribution (Figure of Corneal 2.4.3.3). Transplant Recipient Patients, 1998-2008...... 49 Table 2.2.4: Primary Diagnosis, 1998-2008...... 50 Table 2.2.5: Indications of Corneal Transplant, 2004-2008 ...... 51 TableTable 2.3.1.1: 2.4.3.1: No Availability of Previous ofGrafts Data in on Grafted Post Corneal Eye, 2004-2008 Transplant...... 52 Unaided Vision Table 2.3.1.2: Ocular Co-morbidity, 2004-2008 ...... 52Unaided Vision Table 2.3.1.3: Pre-operative Vision, 2004-2008...... 53(N =979) Table 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008No...... 54% TableData 2.3.2.2: available Donor Age Distribution, 2004-2008...... 55414 42 TableLost 2.3.2.3: to follow Preservation up Media, 2004-2008...... 56524 54 No data 41 4 Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008...... 57

Table 2.3.3.1: Types of Surgeries, 2004-2008...... 58

Table 2.3.3.2: Types of Combined Surgeries, 2004-2008 ...... 58

Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008...... 59

Table 2.3.3.4: Difference in Trephined Sizes of Recipient and Donor Corneas, 2004-

2008...... 60

Table 2.3.3.5: Suture Technique, 2004-2008...... 60

Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61

Table 2.4.2.1: Graft Survival, 2004-2008...... 62

Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63

Table 2.4.2.3: Graft Survival by Gender, 2004-2008 ...... 64

Table 2.4.2.4: Graft Survival by Age, 2004-2008 ...... 65

Table 2.4.2.5: Causes of Graft Failure...... 66

Table 2.4.3.1: Availability of Data on Post Corneal Transplant Unaided Vision ...... 67

Table 2.4.3.2: Unaided Visual Outcome After Cornea Transplant Surgery...... 68

Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69

Table 2.5.1: Post Transplant Complications...... 70

Table 2.5.2: Post Transplant Graft Rejection Types...... 70

List of Figures

Figure 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008...... 54

Figure 2.3.2.3: Preservation Media, 2004-2008 ...... 56

Figure 2.4.2.1: Graft Survival, 2004-2008...... 62

Figure 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008...... 63

Figure 2.4.2.3: Graft Survival by Gender, 2004-2008...... 64

Figure 2.4.2.4: Graft Survival by Age, 2004-2008...... 65

Figure 2.4.3.2: Unaided Visual Outcome After Corneal Transplant Surgery ...... 68

Figure 2.4.3.3: Cumulative Probability for Unaided Vision in Grafts...... 69

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Fifth Report of the Fifth ReportFifthNational Report of the Transplant of the Registry 2008 CORNEAL TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008 CORNEAL TRANSPLANTATION

Table 2.4.3.2: Unaided Visual Outcome After Cornea Transplant Surgery 2.0 INTRODUCTION Optical Non-optical Reason for graft (n=283) (n=131)

Corneal transplantation surgeryNo. allows restor%ation of vision No. in patients with % corneal blindness.Vision Cornealbetter transplantation140 in Malaysia49 dates back to 57 the 1970’s. Today44 it is performedVision by same ophthalmologists 52 both in the govern18 ment and private37 sectors with each28 centre contributingVision worse data towards the Nati36 onal Transplant13 Registry. 26 20 Not known* 55 20 11 8 The National*Either pre Transplant op vision and/or Registry post op (NTR)vision is wanots available established in December 2003. The corneal transplant section of the NTR is a systematic centralised data collection of all corneal transplantations performed in the country. Figure 2.4.3.2: Unaided Visual Outcome After Corneal Transplant Surgery A total of 46 centres Optical registered and agreed to provide Non-optical information on retrospective and prospective corneal60 transplant activities. A total of 75 contributing surgeons participated in the NTR – Corneal Transplant section. Participation was on a voluntary basis.

Retrospective data50 (from 1998 to 2003) on corneal transplant activities were collected to identify the trend of corneal transplant surgery in the recent past. Prospective data (from the year 2004) on corneal transplant activities involved gathering information on all cornea transplants performed40 in Malaysia on two forms. The first form is the i) Corneal Transplant

Notificationt Form (Form N-cds) which is completed at the time of surgery and gathers information on the recipient, operative procedure and the donor. The second form is the ii) 30 CornealPercen Transplant Outcome Form (Form O-cds) which is completed at the end of 12 months and annually thereafter. Follow-up only ceases upon failure of graft, death or loss to follow-up of the patient. 20

0 Vision Better Vision same Vision worse Not known

Vision

44 68

Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases List of Tables Optical Non Optical TableVision 2.1.1: Number of CornealGraft Survival Transplant Graftation Failure and Transplant Graft SurvivalRate per millionGraft Failure population (pmp),(227) 1998-2008 ...... 46(56) (70) (61) Table 2.1.2: Types of CornNo.eal Transplant,% 1998-2008...... 47No. % No. % No. % Table6/18 2.2.1: or better Gender Distribution,62 1998-2008...... 4827 0 0 17 24 2 3 6/24 – 6/60 94 41 3 5 20 29 3 5 TableLess 2.2.2: than 6/60 Ethnic Distribution,69 1998-2008...... 4830 53 95 31 44 56 92 TableData 2.2.3: not available Age Distribution 2 of Corneal1 Transplant0 0Recipient 2 Patients,3 1998-2008...... 490 0 Table 2.2.4: Primary Diagnosis, 1998-2008...... 50 Table 2.2.5: Indications of Corneal Transplant, 2004-2008 ...... 51 TableFigure 2.3.1.1: 2.4.3.3: No ofCumulative Previous Grafts Probability in Grafted for Unaided Eye, 2004-2008 Vision in...... 52 Grafts Table 2.3.1.2: Ocular Co-morbidity, 2004-2008 ...... 52 Table 2.3.1.3: Pre-operative1 Vision, 2004-2008...... 53 Table 2.3.2.1: Source of Donor Cornea Tissue, 2004-2008 ...... 54 Table 2.3.2.2: Donor Age Distribution, 2004-2008...... 55 Table 2.3.2.3: 0.8Preservation Media, 2004-2008...... 56 Table 2.3.2.4: Cause of Death in Corneal Donors, 2004-2008...... 57 Table 2.3.3.1: 0.6Types of Surgeries, 2004-2008...... 58 Table 2.3.3.2: Types of Combined Surgeries, 2004-2008 ...... 58 Table 2.3.3.3: Recipient Cornea Trephine Size, 2004-2008...... 59 Table 2.3.3.4: 0.4Difference in Trephined Sizes of Recipient and Donor Corneas, 2004- Cumulative Probability Cumulative 2008...... 60 Table 2.3.3.5: Suture Technique, 2004-2008...... 60 0.2 Table 2.4.1: Stock and Flow - Graft Status (Whole Database)...... 61 Table 2.4.2.1: Graft Survival, 2004-2008...... 62 Table 2.4.2.2: Graft Survival by Optical and Non-optical Indication, 2004-2008 ...... 63 Table 2.4.2.3: Graft6/6 Survival6/12 by Gender,6/24 2004-20086/60 4/60 ...... 642/60 CF PL Table 2.4.2.4: Graft Survival6/9 by6/18 Age, 2004-20086/36 5/60...... 653/60 1/60 HM NPL Table 2.4.2.5: Causes of Graft Failure...... 66 Table 2.4.3.1: Availability of Data on Post CornealUnaided TransplantVision Unaided Vision ...... 67 Table 2.4.3.2: Unaided Visual Outcome Afteroptical Cornea Transplantnon optical Surgery...... 68 Table 2.4.3.3: Unaided Vision for Optical and Non Optical Cases...... 69 Table 2.5.1: Post Transplant Complications...... 70 Table 2.5.2: Post Transplant Graft Rejection Types...... 70

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2.5 POST CORNEAL TRANSPLANT COMPLICATIONS 2.0 INTRODUCTION The common complications observed at one year were post-keratoplasty glaucoma, Cornealgraft transplantation vascularisation, surgeryepithelial allows problems restor andation graft of rejection. vision in Rejection patients was with seen corneal in blindness.11% who Corneal were transplantation on follow-up (Table in Malays 2.5.1).ia En datesdothelial back rejection to the 1970’s.is the commonest Today it is performedgraft rejection by ophthalmologists (Table 2.5.2). both in the government and private sectors with each centre contributing data towards the National Transplant Registry.

The Table National 2.5.1: Transplant Post Transplant Registry Complications (NTR) was established in December 2003. The corneal transplant section of the NTR is a One systematic year 2 centralisednd year 3 datard year collection 4th year of all corneal Total outcome outcome outcome outcome transplantations performed in the country. (N=366) (N=225) (N=82) (N=46) (N=13) A total of 46 centres registered andNo. agreed % toNo. provide % informationNo. % onNo. retrospective% No. % and prospectiveAny complications corneal transplant activities.147 A 70tota l 40of 75 19contributing 20 9 surg4eons participated2 211 62 in the NTRComplication – Corneal Epithelial Transplant Problem section. 37 Participation 17 7 was9 on a voluntary3 7 basis.2 18 49 14 Wound 2 1 0 0 0 0 0 0 2 1 Dehiscence Retrospective dataSuture (from infiltration 1998 to/ 2003) on corneal transplant activities were collected to 22 10 4 5 2 5 0 0 28 8 identify the trend ofabscess corneal transplant surgery in the recent past. Prospective data (from the year 2004) on cornealEndophthalmitis transplant activities1 0 involved1 gathering1 0 information0 0 0 on all2 cornea1 transplants performedMicrobial in Malaysia keratitis on 25two forms.12 The5 first7 form2 is the5 i) Corneal0 0 Transplant32 9 Notification FormVascularisation (Form N-cds) which44 is21 completed8 11 at the5 time12 of surgery2 18 and59 gathers17 Post-keratoplasty 59 28 21 28 13 30 2 18 95 28 information on theglaucoma recipient, operative procedure and the donor. The second form is the ii) Corneal TransplantGraft Outcome Rejection Form33 (Form15 O-cds)6 which8 0 is completed0 0 at 0 the end39 of11 12 months and annuallyNo datathereafter. Follow-up67 31only ceases34 46upon 23failure 53 of graft,7 death64 131or loss38 to follow-up* Each of patient the patient.may have more than one complication

Table 2.5.2: Post Transplant Graft Rejection Types One year 2nd year 3rd year 4th year Total outcome outcome outcome outcome (N = 366) (N=225) (N=82) (N=46) (N=13) No. % No. % No. % No. % No. % Graft Rejection 33 6 0 0 39 Types Epithelial 11 33 2 33 0 0 0 0 13 33 Stromal 11 33 0 0 0 0 0 0 11 28 Endothelial 12 36 3 50 0 0 0 0 15 38 No data 5 15 1 17 0 0 0 0 6 15 * Each patient may have more than one type of rejection

4470

CHAPTER 3

HEART AND LUNG TRANSPLANTATION

Editors: Mr Mohamed Ezani Md. Taib Dato’ Dr David Chew Soon Ping Dr Ashari Yunus

Expert Panel: Mr Mohamed Ezani Md. Taib (Chairperson) Dr Abdul Rais Sanusi Datuk Dr Aizai Azan Abdul Rahim Dr Ashari Yunus Dato’ Dr David Chew Soon Ping

Contents

3.0 Introduction

3.1 Stock and Flow of Heart Transplantation

3.2 Recipients’ Characteristics x Demographics and Clinical Status x Primary Diagnosis

3.3 Transplant Practices x Type of Transplant x Immunosuppressive Therapy and Other Medications x Duration of Waiting Time on the Waiting List

3.4 Transplant Outcomes x Post Transplant Complications x Patient Survival x Causes of Death

Fifth Fifth ReportFifth Report Report of the of of the the HEART HEART AND AND LUNG LUNG TRANSPLANTATION TRANSPLANTATION NationalNationalNational Transplant Trans Trans pRegistrylantplant Re Registr g2008istry 2008y 2008

ListList of of Tables Tables TableTable 3.1.1a: 3.1.1a: Stock Stock and and Flow Flow of of Heart Heart Transplantation, Transplantation, 1997-2008...... 1997-2008...... 74 74 TableTable 3.2.1a: 3.2.1a: Distribution Distribution of of Patients Patients by by Gender, Gender, 1997-2008 1997-2008 ...... 75 75 TableTable 3.2.2a: 3.2.2a: Distribution Distribution of of Patients Patients by by Ethnic Ethnic Group, Group, 1997-2008 1997-2008 ...... 75 75 TableTable 3.2.3a: 3.2.3a: Distribution Distribution of of Patients Patients by by Age, Age, 1997-2008 1997-2008 ...... 75 75 TableTable 3.2.4a: 3.2.4a: Distribution Distribution of of Patie Patientsnts by by Primary Primary Diagnosis, Diagnosis, 1997-2008 1997-2008...... 75 75 TableTable 3.3.1a: 3.3.1a: Distribution Distribution of of Patie Patientsnts by by Heart Heart Procedure, Procedure, 1997-2008...... 1997-2008...... 76 76 TableTable 3.3.2a: 3.3.2a: Distribution Distribution of of Patient Patients sby by Immunosuppres Immunosuppressivesive Used, Used, 1997-2008 1997-2008...... 76 76 TableTable 3.3.3a: 3.3.3a: Immunosuppressive Immunosuppressive Used Used at at Time Time of of Last Last Follow-up Follow-up up up to to 2008 2008...... 76 76 TableTable 3.3.4a: 3.3.4a: Duration Duration of of Waiting Waiting Time Time on on Waiting Waiting List, List, 1997-2008 1997-2008...... 77 77 TableTable 3.4.1a: 3.4.1a: Post Post Transplant Transplant Even Eventsts at at Last Last Follow-up Follow-up up up to to 2008 2008 ...... 78 78 TableTable 3.4.2a: 3.4.2a: Post Post Transplant Transplant Ma Malignancieslignancies at at Follow-up Follow-up up up to to 2008 2008...... 78 78 TableTable 3.4.3a: 3.4.3a: Non-compliance Non-compliance at at Follow-up Follow-up up up to to 2008 2008...... 79 79 TableTable 3.4.4a: 3.4.4a: Patient Patient Treated Treated for for Re Rejectionjection at at Follow-up Follow-up up up to to 2008 2008...... 79 79 TableTable 3.4.5a: 3.4.5a: Distribution Distribution of of Patients Patients by by Time Time of of Death Deaths,s 1997-2008, 1997-2008...... 79 79 TableTable 3.4.6a: 3.4.6a: Patient Patient Survival, Survival, 1997-2008 1997-2008...... 80 80 TableTable 3.4.7a: 3.4.7a: Cause Cause of of Death Death at at Discharge, Discharge, 1997-2008 1997-2008...... 81 81 TableTable 3.4.8a: 3.4.8a: Cause Cause of of Death Death at at Follow-up, Follow-up, 1997-2008 1997-2008...... 81 81 TableTable 3.1.1b: 3.1.1b: Stock Stock and and Flow Flow of of Lung Lung Transplantation, Transplantation, 2005-2008…………………..82 2005-2008…………………..82 TableTable 3.2.1b: 3.2.1b: Distribution Distribution of of Patients Patients by by Gender, Gender, 2005-2008…………………………83 2005-2008…………………………83 TableTable 3.2.2b: 3.2.2b: Distribution Distribution of of Patients Patients by by Ethnic Ethnic Group, Group, 2005-2008…………………..83 2005-2008…………………..83 TableTable 3.2.3b: 3.2.3b: Distribution Distribution of of Patients Patients by by Age, Age, 2005-2008…………………………….83 2005-2008…………………………….83 TableTable 3.2.4b: 3.2.4b: Distribution Distribution of of Patient Patients sby by Primary Primary Diagnosis, Diagnosis, 2005 2005 -2008…………….83 -2008…………….83 TableTable 3.3.1b: 3.3.1b: Distribution Distribution of of Patie Patientsnts by by Lung Lung Procedure, Procedure, 2005-2008………………..84 2005-2008………………..84 TableTable 3.3.3b 3.3.3b: Immunosuppressive: Immunosuppressive Used Used at at Time Time Follow-up Follow-up to to 2008………………….84 2008………………….84 TableTable 3.4.5b: 3.4.5b: Distribution Distribution of of pa patientstients by by time time of of deaths, deaths, 2005-2008………………….84 2005-2008………………….84

ListList of of Figures Figures FigureFigure 3.1.1a: 3.1.1a: Stock Stock and and Flow Flow of of Heart Heart Transplantation, Transplantation, 1997-2008...... 1997-2008...... 74 74 FigureFigure 3.4.6a: 3.4.6a: Patient Patient Survival, Survival, 1997-2008……………………………………………80 1997-2008……………………………………………80 FigureFigure 3.1.1b: 3.1.1b: Stock Stock and and Flow Flow of of Lung Lung Tr Transplantansplant and and Heart Heart Lung Lung Transplant……....82 Transplant……....82

7272 FifthFifth Report Report of ofthe the NationalNational Trans Transplantplant Re gRegistryistry 2008 2008 HEART AND LUNG TRANSPLANTATION 3.0 INTRODUCTION

Following the introduction of heart transplant in 1997 and lung transplant in 2005, the number of thoracic organ transplants has been few and far between. The main limitation to the performance of heart and lung transplants has been the lack of success in obtaining viable donor thoracic organs. Because of the infrequent performance of thoracic organ transplants results would not be expected to improve.

In 2008, no thoracic organ transplants were conducted. For end stage heart failure patients, a new approach to keep the patients alive while awaiting transplant has been explored with the use of ventricular assist devices as a bridge to transplant.

2 patients reached their 10th anniversary following their transplants in 1998.

The rest of the report that follows will review the results of heart and lung transplantation in Malaysia till end of 2008.

73 Fifth Fifth ReportFifth Report Report of the of of the the HEART HEART AND AND LUNG LUNG TRANSPLANTATION TRANSPLANTATION NationalNationalNational Transplant Trans Trans pRegistrylantplant Re Registr g2008istry 2008y 2008

3.1List STOCK of Tables AND FLOW Table 3.1.1a: Stock and Flow of Heart Transplantation, 1997-2008...... 74 TableTable 3.1.1a: 3.2.1a: Stock Distribution and Flow of ofPatients Heart Transplantation,by Gender, 1997-2008 1997-2008 ...... 75 YearTable 3.2.2a: Distribution1997 1998 of1999 Patients 2000 by2001 Ethnic 2002 Group, 2003 1997-2008 2004 2005 ...... 2006 2007 752008 New transplant Table 3.2.3a: Distribution1 3 of2 Patients 3 by Age,4 1997-20080 2 ...... 0 1 1 1 750 patientsTable 3.2.4a: Distribution of Patients by Primary Diagnosis, 1997-2008 ...... 75 Deaths 0 1 0 3 1 3 1 0 0 1 0 0 RetransplantedTable 3.3.1a: Distribution0 0 of0 Patie nts0 by Heart0 Procedure,0 0 1997-2008...... 0 0 0 1 760 LostTable to follow 3.3.2a: Distribution of Patients by Immunosuppressive Used, 1997-2008...... 76 0 0 0 0 0 0 0 0 0 0 0 0 upTable 3.3.3a: Immunosuppressive Used at Time of Last Follow-up up to 2008...... 76 Alive at 31st Table 3.3.4a: Duration1 3 of Waiting5 Time5 on8 Waiting5 List,6 1997-20086 7...... 7 8 778 DecemberTable 3.4.1a: Post Transplant Events at Last Follow-up up to 2008 ...... 78 Note:Table The 3.4.2a: same patient Post wasTransplant re-transplanted Malignancies in the year at2007, Follow-up thus only upcounted to 2008 as one...... 78 Table 3.4.3a: Non-compliance at Follow-up up to 2008 ...... 79 Table 3.4.4a: Patient Treated for Rejection at Follow-up up to 2008...... 79 FigureTable 3.1.1a: 3.4.5a: Stock Distribution and Flow of Patientsof Heart by Transplantation, Time of Death 1997-2008s, 1997-2008 ...... 79 New transplant patients Alive at 31st December Table 3.4.6a: Patient Survival, 1997-2008...... 80 9 Table 3.4.7a: Cause of Death at Discharge, 1997-2008...... 81 Table 3.4.8a:8 Cause of Death at Follow-up, 1997-2008 ...... 81 Table 3.1.1b: Stock and Flow of Lung Transplantation, 2005-2008…………………..82 Table 3.2.1b:7 Distribution of Patients by Gender, 2005-2008…………………………83 Table 3.2.2b: Distribution of Patients by Ethnic Group, 2005-2008…………………..83 Table 3.2.3b:6 Distribution of Patients by Age, 2005-2008…………………………….83 Table 3.2.4b: Distribution of Patients by Primary Diagnosis, 2005 -2008…………….83 Table 3.3.1b:5 Distribution of Patients by Lung Procedure, 2005-2008………………..84 Table 3.3.3b: Immunosuppressive Used at Time Follow-up to 2008………………….84 4 Table 3.4.5b: Distribution of patients by time of deaths, 2005-2008………………….84

umber of patients 3 N List of Figures2 Figure 3.1.1a: Stock and Flow of Heart Transplantation, 1997-2008...... 74 Figure 3.4.6a:1 Patient Survival, 1997-2008……………………………………………80 Figure 3.1.1b: Stock and Flow of Lung Transplant and Heart Lung Transplant……....82 0 1997 1999 2001 2003 2005 2007 1998 2000 2002 2004 2006 2008 Year

7472 FifthFifth Report Report of ofthe the NationalNational Trans Transplantplant Re gRegistryistry 2008 2008 HEART AND LUNG TRANSPLANTATION 3.23.0 RECIPIENTS’INTRODUCTION CHARACTERISTICS

TableFollowing 3.2.1a: the Distribution introduction of of Patients heart transplant by Gender, in 1997-20081997 and lung transplant in 2005, the numberYear of97 thoracic98 organ99 00transplants01 02 has 03 been 04 few 05and far06 between.07 08 TheTOTAL main limitationGender toNo. the No.performance No. No. of heartNo. andNo. lungNo. transplants No. No. has No. been No.the lackNo. of successNo. Male 1 3 0 2 2 0 2 0 1 1 0 0 12 Femalein obtaining 0 viable0 donor2 thoracic1 2 organs.0 Because0 0 of the0 infrequent0 1 performance0 6 of thoracicTOTAL organ1 transplants3 2 results3 would4 not0 be2 expected0 to1 improve.1 1 0 18 Note: The same patient was re-transplanted in the year 2007, thus only counted as one. In 2008, no thoracic organ transplants were conducted. For end stage heart failure patients,Table 3.2.2a: a new Distribution approach toof keepPatients the bypatients Ethnic alive Group, while 1997-2008 awaiting transplant has been exploredYear with the97 use98 of ventricular99 00 assi01 st devices02 03 as a04 bridge05 to transplant.06 07 08 TOTAL Ethnic group No. No. No. No. No. No. No. No. No. No. No. No. No. Malay 0 0 1 1 2 0 0 0 1 0 0 0 5 th 2Chinese patients reached0 their0 100 anniversary1 0 following0 1 their0 transplants0 0 in 1998.1 0 3 Indian 1 3 1 1 2 0 1 0 0 1 0 0 10 TOTALThe rest of the1 report3 2 that 3 follows4 will0 review2 0 the 1 results1 of 1 heart0 and 18 lung Note: The same patient was re-transplanted in the year 2007, thus only counted as one. transplantation in Malaysia till end of 2008. Table 3.2.3a: Distribution of Patients by Age, 1997-2008 Year 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL Age, years No. No. No. No. No. No. No. No. No. No. No. No. No. 0-19 0 0 2 1 1 0 0 0 1 0 1 0 6 20-39 0 2 0 0 0 0 0 0 0 0 0 0 2 40-59 1 1 0 2 3 0 2 0 0 1 0 0 10 60 0 0 0 0 0 0 0 0 0 0 0 0 0 TOTAL 1 3 2 3 4 0 2 0 1 1 1 0 18 Mean 51 40 16 37 38 - 46 - 15 44 15 - 35 SD - 9 1 22 17 - 8 - - - - - 16 Median 51 37 16 44 43 - 46 - 15 44 15 - 40 Minimum 51 33 15 13 14 - 40 - 15 44 15 - 13 Maximum 51 50 16 55 54 - 52 - 15 44 15 - 55 Age=date of transplant-date of birth Note: The same patient was re-transplanted in the year 2007, thus only counted as one. Age for 2007 patient was same for 1st and 2nd transplant

Table 3.2.4a: Distribution of Patients by Primary Diagnosis, 1997-2008 Year 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL Primary diagnosis No. No. No. No. No. No. No. No. No. No. No. No. No. Ischaemic 1 3 0 1 1 0 2 0 0 1 0 0 9 Cardiomyopathy Idiopathic Dilated 0 0 2 1 2 0 0 0 1 0 0 0 6 Cardiomyopathy Restrictive 0 0 0 0 0 0 0 0 0 0 0 0 0 Cardiomyopathy End Stage Valvular 0 0 0 0 1 0 0 0 0 0 0 0 1 Heart Disease Hypertrophic 0 0 0 1 0 0 0 0 0 0 0 0 1 Cardiomyopathy Others 0 0 0 0 0 0 0 0 0 0 1 0 1 TOTAL 1 3 2 3 4 0 2 0 1 1 1 0 18 Note: The same patient was re-transplanted in the year 2007, thus only counted as one.

7573 Fifth Fifth ReportFifth Report Report of the of of the the HEART HEART AND AND LUNG LUNG TRANSPLANTATION TRANSPLANTATION NationalNationalNational Transplant Trans Trans pRegistrylantplant Re Registr g2008istry 2008y 2008

3.3List TRANSPLANT of Tables PRACTICES Table 3.1.1a: Stock and Flow of Heart Transplantation, 1997-2008...... 74 TableTable 3.3.1a: 3.2.1a: Distribution Distribution of of Patient Patientss by by Heart Gender, Procedure, 1997-2008 1997-2008 ...... 75 YearTable 3.2.2a: Distribution97 98 99of Patients00 01 by Ethnic02 03 Group,04 1997-200805 06 ...... 07 08 TOTAL 75 Heart Table 3.2.3a: DistributionNo. No. No. of PatientsNo. No. by Age,No. 1997-2008No. No. No...... No. No. No. No. 75 ProcedureTable 3.2.4a: Distribution of Patients by Primary Diagnosis, 1997-2008 ...... 75 Orthotopic 1 1 0 0 0 0 0 0 0 0 0 0 2 BicavalTable 3.3.1a: Distribution of Patients by Heart Procedure, 1997-2008...... 76 OrthotopicTable 3.3.2a: Distribution of Patients by Immunosuppressive Used, 1997-2008...... 76 0 2 2 3 4 0 2 0 1 1 2 0 17 TraditionalTable 3.3.3a: Immunosuppressive Used at Time of Last Follow-up up to 2008...... 76 HeterotopicTable 3.3.4a: Duration0 0 of Waiting0 0 Time0 on0 Waiting0 List,0 1997-20080 0 ...... 0 0 0 77 TOTALTable 3.4.1a: Post1 Transplant3 2 Even3 ts 4at Last0 Follow-up2 0 up 1to 20081 ...... 2 0 19 78 Table 3.4.2a: Post Transplant Malignancies at Follow-up up to 2008 ...... 78 TableTable 3.3.2a: 3.4.3a: Distribution Non-compliance of Patients at Follow-up by Immunosuppressi up to 2008 ...... ve Used, 1997-2008 79 YearTable 3.4.4a: Patient97 Treated98 for99 Re00jection01 at 02Follow-up03 04up to05 200806...... 07 08 Total 79 Type of No. No. No. No. No. No. No. No. No. No. No. No. No. immunosuppressiveTable 3.4.5a: Distribution of Patients by Time of Deaths, 1997-2008 ...... 79 SteroidsTable 3.4.6a: Patient Survival, 1997-2008 ...... 80 PrednisoloneTable 3.4.7a: Cause1 of Death3 at2 Discharge,3 4 1997-20080 1 ...... 0 1 0 1 0 16 81 MethylprednisoloneTable 3.4.8a: Cause 1 of Death3 at2 Follow-up,3 4 1997-20080 2 ...... 0 1 1 2 0 19 81 Calcineurin Table 3.1.1b: Stock and Flow of Lung Transplantation, 2005-2008…………………..82 InhibitorsTable 3.2.1b: Distribution of Patients by Gender, 2005-2008…………………………83 Cyclosporin A 0 0 0 0 0 0 1 0 0 1 0 0 2 NeoralTable® 3.2.2b: Distribution1 3 of Patients2 3 by 4Ethnic 0 Group,0 2005-2008…………………..830 1 0 0 0 14 TacrolimusTable 3.2.3b: (FK506) Distribution 0 0 of Patients0 0 by 0Age, 02005-2008…………………………….83 0 0 0 0 1 0 1 AntimetabolitesTable 3.2.4b: Distribution of Patient s by Primary Diagnosis, 2005 -2008…………….83 AzathioprineTable 3.3.1b: (AZA) Distribution 1 3 of Patie2 nts3 by 4Lung 0 Procedure, 2 0 2005-2008………………..840 1 0 0 16 Mycophenolate Table 3.3.3b: Immunosuppressive0 0 0 Used0 at1 Time0 Follow-up0 0 to 12008………………….84 0 1 0 3 MofetilTable (MMF) 3.4.5b: Distribution of patients by time of deaths, 2005-2008………………….84 Anti-lymphocyte Receptor Antibodies Anti-thymocyteList of Figures 0 0 0 0 0 0 0 0 0 0 2 0 2 globulinFigure (ATG) 3.1.1a: Stock and Flow of Heart Transplantation, 1997-2008...... 74 TOTAL patients at Figure 3.4.6a: Patient1 Survival,3 2 1997-2008……………………………………………803 4 0 2 0 1 1 2 0 19 notificationFigure 3.1.1b: Stock and Flow of Lung Transplant and Heart Lung Transplant……....82

Table 3.3.3a: Immunosuppressive Used at Time of Last Follow-up up to 2008 Year of follow up* 2004 2005 2006 2007 2008 Type of immunosuppressive No. No. No. No. No. Steroids Prednisolone 1 3 2 2 2 Methylprednisolone 0 0 0 0 0 Calcineurin Inhibitors Cyclosporin A Neoral® 1 6 7 5 7 Tacrolimus (FK506) 1 Antimetabolites Azathioprine (AZA) 1 3 2 1 1 Mycophenolate Mofetil (MMF) 3 3 5 4 6 TOTAL patients at follow-up 6 6 7 7 8 *Data according to year of follow up of transplanted patients

76 72 FifthFifth Report Report of ofthe the NationalNational Trans Transplantplant Re gRegistryistry 2008 2008 HEART AND LUNG TRANSPLANTATION Table3.0 INTRODUCTION 3.3.4a: Duration of Waiting Time on Waiting List, 1997-2008 Year 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL Duration Following the introductionNo. No. No. of heartNo. No.transplant No. No.in 1997 No. andNo. lung No. transplant No. No. in 2005,No. the (months)*number of thoracic organ transplants has been few and far between. The main <5 0 2 1 0 1 0 1 0 0 0 0 0 5 5limitation10 to the1 performance 0 1 of0 heart 1 and 0lung 0transplants 0 1 has been0 the0 lack0 of success4 10in obtaining15 viable0 donor0 0 thoracic 1 organs.0 0 Because0 0 of the0 infrequent1 2 performance0 4 of 15thoracic20 organ transplants0 0 results0 1 would0 not0 be expected0 0 to0 improve. 0 0 0 1 20 25 0 0 0 0 0 0 0 0 0 0 0 0 0 25In 2008,30 no thoracic0 0 organ0 transplants0 0 we0 re conducted.0 0 0 For 0 end stage0 heart0 failure0 30patients,35 a new 0approach 0 to0 keep0 the0 patients 0 alive0 while0 0awaiting 0 transplant0 0 has been0 35explored40 with the0 use0 of ventricular0 0 assi0 st devices0 1 as a0 bridge0 to 0transplant. 0 0 1 TOTAL 1 2 2 2 2 0 2 0 1 1 2 0 15 Mean2 patients reached6 their2 10th4 anniversary15 5 following- 20 their- transplants9 10 in13 1998. - 9 SD - 0 1 6 5 - 25 - - - 0 - 9 Median 6 2 4 15 5 - 20 - 9 10 13 - 8 MinimumThe rest of the6 report2 that3 10 follows 1 will- review2 - the 9 results10 of13 heart- and lung1 Maximumtransplantation in6 Malaysia2 5 till end19 of8 2008. - 37 - 9 10 13 - 37 *Duration=date of transplant-date added to wait list

7773 Fifth Fifth ReportFifth Report Report of the of of the the HEART HEART AND AND LUNG LUNG TRANSPLANTATION TRANSPLANTATION NationalNationalNational Transplant Trans Trans pRegistrylantplant Re Registr g2008istry 2008y 2008

3.4List TRANSPLANT of Tables OUTCOMES Table 3.1.1a: Stock and Flow of Heart Transplantation, 1997-2008...... 74 TableTable 3.4.1a: 3.2.1a: Post Distribution Transplant of Even Patientsts at by Last Gender, Follow-up 1997-2008 up to 2008 ...... 75 Year of Table 3.2.2a: Distribution97 98 99of Patients00 01 by Ethnic02 03 Group,04 1997-200805 06 ...... 07 08 TOTAL 75 transplant*Table 3.2.3a: Distribution of Patients by Age, 1997-2008 ...... 75 TypeTable of post3.2.4a: Distribution of Patients by Primary Diagnosis, 1997-2008 ...... 75 transplant No. No. No. No. No. No. No. No. No. No. No. No. No. eventsTable 3.3.1a: Distribution of Patients by Heart Procedure, 1997-2008...... 76 DrugTable Treated 3.3.2a: Distribution of Patients by Immunosuppressive Used, 1997-2008...... 76 1 2 2 1 3 0 1 0 0 0 0 0 10 HypertensionTable 3.3.3a: Immunosuppressive Used at Time of Last Follow-up up to 2008...... 76 Bone Disease Table 3.3.4a: Duration1 0 of Waiting0 0 Time1 on0 Waiting0 List,0 1997-20080 0 ...... 0 0 2 77 (Symptomatic)Table 3.4.1a: Post Transplant Events at Last Follow-up up to 2008 ...... 78 Chronic Liver 0 0 0 0 0 0 0 0 0 0 0 0 0 DiseaseTable 3.4.2a: Post Transplant Malignancies at Follow-up up to 2008 ...... 78 CataractsTable 3.4.3a: Non-compliance0 0 0 at0 Follow-up0 0 up to0 20080 ...... 0 0 0 0 0 79 DiabetesTable 3.4.4a: Patient1 2Treated 0 for0 Rejection0 0 at Follow-up1 0 up0 to 20080 ...... 0 0 4 79 Renal Table 3.4.5a: Distribution1 1 of0 Patients0 1by Time0 of0 Death0 s, 1997-20080 0 ...... 0 0 3 79 DysfunctionTable 3.4.6a: Patient Survival, 1997-2008...... 80 StrokeTable 3.4.7a: Cause0 of0 Death0 at 0Discharge, 0 0 1997-20080 0 ...... 0 0 0 0 0 81 Drug-Treated 1 2 2 1 3 0 1 0 1 0 0 0 11 HyperlipidaemiaTable 3.4.8a: Cause of Death at Follow-up, 1997-2008 ...... 81 TOTALTable 3.1.1b: Stock and Flow of Lung Transplantation, 2005-2008…………………..82 patientsTable at3.2.1b: Distribution1 2 2of Patients1 3 by Gender,0 1 2005-2008…………………………830 1 0 1 0 12 follow-upTable 3.2.2b: Distribution of Patients by Ethnic Group, 2005-2008…………………..83 *DataTable according 3.2.3b: to Distribution year of transplant of Patients of patient by Age, 2005-2008…………………………….83 Table 3.2.4b: Distribution of Patients by Primary Diagnosis, 2005 -2008…………….83 TableTable 3.4.2a: 3.3.1b: Post Distribution Transplant of Ma Patielignanciesnts by Lung at Follow-up Procedure, up 2005-2008………………..84 to 2008 Year of Table 3.3.3b: Immunosuppressive97 98 99 00 Used01 at Time02 Follow-up03 04 to05 2008………………….8406 07 08 TOTAL transplant* TypeTable of post3.4.5b: Distribution of patients by time of deaths, 2005-2008………………….84 transplant No. No. No. No. No. No. No. No. No. No. No. No. No. malignancies Recurrence of pre- List of Figures 0 0 0 0 0 0 0 0 0 0 0 0 0 transplantFigure 3.1.1a:tumour Stock and Flow of Heart Transplantation, 1997-2008...... 74 De Novo solid Figure 3.4.6a: Patient1 Survival,0 0 1997-2008……………………………………………800 0 0 0 0 0 0 0 0 1 tumour DeFigure Novo 3.1.1b: Stock and Flow of Lung Transplant and Heart Lung Transplant……....82 lymphoproliferative 0 0 0 0 0 0 0 0 0 0 0 0 0 disorder Skin 0 0 0 0 0 0 0 0 0 0 0 0 0 TOTAL patients 1 2 2 1 3 0 1 0 1 0 1 0 12 at follow-up *Data according to year of transplant of patient

78 72 FifthFifth Report Report of ofthe the NationalNational Trans Transplantplant Re gRegistryistry 2008 2008 HEART AND LUNG TRANSPLANTATION Table3.0 INTRODUCTION 3.4.3a: Non-compliance at Follow-up up to 2008 Year of transplant* 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL Non-compliance Following the introductionNo. No.of heartNo. transplantNo. No. inNo. 1997 No. and No.lung No.transplant No. No.in 2005,No. the No. duringnumber follow-up of thoracic organ transplants has been few and far between. The main x Yes 0 0 2 0 0 0 1 0 0 0 0 0 3 limitation to the performance of heart and lung transplants has been the lack of success x No 1 2 0 1 3 0 0 0 1 0 1 0 9 TOTALin obtaining patients viable at donor thoracic organs. Because of the infrequent performance of 1 2 2 1 3 0 1 0 1 0 1 0 12 follow-upthoracic organ transplants results would not be expected to improve. Areas of noncompliance:In 2008, no thoracic organ transplants were conducted. For end stage heart failure x Immunosuppression patients, a new approach0 to 0keep 1the patients0 0 alive0 while1 awaiting0 0 transplant0 0 has0 been 2 exploredmedication with the use of ventricular assist devices as a bridge to transplant. x Patient unable to afford 0 th 0 0 0 0 0 0 0 0 0 0 0 0 2 patientsimmunosuppression reached their 10 anniversary following their transplants in 1998. medications Thex Other rest medication of the report0 that0 follows0 0 will0 review0 0 the results0 0 of 0 heart 0 and0 lung 0 x Other therapeutic transplantation in Malaysia0 till0 end1 of 2008.0 0 0 0 0 0 0 0 0 1 regimen TOTAL patients with 0 0 2 0 0 0 1 0 0 0 0 0 3 noncompliance *Data according to year of transplant of patient

Table 3.4.4a: Patient Treated for Rejection at Follow-up up to 2008 Year of 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL transplant* Patient treated No. No. No. No. No. No. No. No. No. No. No. No. No. for rejection x Yes 0 1 1 0 1 0 0 0 1 0 0 0 4 x 1 1 1 1 2 0 1 0 0 0 1 0 8 No TOTAL patients at 1 2 2 1 3 0 1 0 1 0 1 0 12 follow-up Number of rejection events x 1 0 1 0 0 1 0 0 0 1 0 0 0 3 x 2 0 0 0 0 0 0 0 0 0 0 0 0 0 x 0 0 1 0 0 0 0 0 0 0 0 0 1 3 TOTAL patients with 0 1 1 0 1 0 0 0 1 0 0 0 4 rejection *Data according to year of transplant of patient

Table 3.4.5a: Distribution of Patients by Time of Deaths, 1997-2008 Year of discharge 97 98 99 00 01 02 03 04 05 06 07 TOTAL Time of deaths* No. No. No. No. No. No. No. No. No. No. No. No. <3 months (at 0 1 0 2 0 1 1 0 0 1 0 6 discharge) 3-<6 months 0 0 0 0 0 0 0 0 0 0 0 0 6 months-1 year 0 0 0 0 0 1 0 0 0 0 0 1 >1 year 0 0 0 1 1 1 0 0 0 0 0 3 TOTAL patients who 0 1 0 3 1 3 1 0 0 1 0 10 died *Time=Date of death–date of transplant

7973 Fifth Fifth ReportFifth Report Report of the of of the the HEART HEART AND AND LUNG LUNG TRANSPLANTATION TRANSPLANTATION NationalNationalNational Transplant Trans Trans pRegistrylantplant Re Registr g2008istry 2008y 2008

TableList of3.4.6a: Tables Patient Survival, 1997-2008 YearTable of Transplant3.1.1a: Stock and Flow of Heart Transplantation,1997-2008 1997-2008...... 74 IntervalTable 3.2.1a: Distribution of% Patients Survival by Gender, 1997-2008SE ...... 75 6 Tablemonths 3.2.2a: Distribution of Patients68 by Ethnic Group,11 1997-2008 ...... 75 1 year 63 11 2 Tableyear 3.2.3a: Distribution of Patients50 by Age, 1997-200812 ...... 75 3 Tableyear 3.2.4a: Distribution of Patie44 nts by Primary Diagnosis,12 1997-2008 ...... 75 4 Tableyear 3.3.1a: Distribution of Patie44 nts by Heart Procedure,12 1997-2008...... 76 5 Tableyear 3.3.2a: Distribution of Patient44 s by Immunosuppres12 sive Used, 1997-2008...... 76 6 Tableyear 3.3.3a: Immunosuppressive44 Used at Time of Last12 Follow-up up to 2008...... 76 7 Tableyear 3.3.4a: Duration of Waiting44 Time on Waiting List,12 1997-2008 ...... 77 8 Tableyear 3.4.1a: Post Transplant Even44 ts at Last Follow-up12 up to 2008 ...... 78 9 year 44 12 10Table year 3.4.2a: Post Transplant Ma44lignancies at Follow-up12 up to 2008 ...... 78 SE=standardTable 3.4.3a: error Non-compliance at Follow-up up to 2008 ...... 79 DurationTable 3.4.4a:= date follow Patient up-date Treated transplant, for Re if alivejection at discharge at Follow-up up to 2008...... 79 Table 3.4.5a:= date of Distribution discharge-date of of Patientstransplant, by if aliveTime but of lost Death to follows, 1997-2008 up ...... 79 Table 3.4.6a:= date of Patient discharge-date Survival, of transplant, 1997-2008 if dead...... at discharge 80 Table 3.4.7a: Cause of Death at Discharge, 1997-2008...... 81 Table 3.4.8a: Cause of Death at Follow-up, 1997-2008 ...... 81 FigureTable 3.4.6a: 3.1.1b: Patient Stock andSurvival, Flow of1997-2008 Lung Transplantation, 2005-2008…………………..82 Table 3.2.1b: Distribution of Patients by Gender, 2005-2008…………………………83 Kaplan-Meier survival estimate Table 3.2.2b: Distribution of Patients by Ethnic Group, 2005-2008…………………..83 Table 3.2.3b: Distribution of Patients by Age, 2005-2008…………………………….83 Table1.00 3.2.4b: Distribution of Patients by Primary Diagnosis, 2005 -2008…………….83 Table 3.3.1b: Distribution of Patients by Lung Procedure, 2005-2008………………..84 Table 3.3.3b: Immunosuppressive Used at Time Follow-up to 2008………………….84 Table0.75 3.4.5b: Distribution of patients by time of deaths, 2005-2008………………….84

List0.50 of Figures Figure 3.1.1a: Stock and Flow of Heart Transplantation, 1997-2008...... 74 Figure 3.4.6a: Patient Survival, 1997-2008……………………………………………80 Figure 3.1.1b: Stock and Flow of Lung Transplant and Heart Lung Transplant……....82

Cumulativesurvival 0.25

0.00 0 .5 1 2 3 4 5 6 7 8 9 10

Duration in years

80 72 FifthFifth Report Report of ofthe the NationalNational Trans Transplantplant Re gRegistryistry 2008 2008 HEART AND LUNG TRANSPLANTATION Table3.0 INTRODUCTION 3.4.7a: Cause of Death at Discharge, 1997-2008 Year 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL CauseFollowing of death the introductionNo. No. No.of heartNo. transplantNo. No. inNo. 1997 No. and No.lung No.transplant No. No.in 2005,No. the Hyperacute number of thoracic0 organ0 0transplants 0 0 has0 been1 few0 and0 far0 between.0 0 The main1 rejection Multilimitation organ to the performance of heart and lung transplants has been the lack of success 0 0 0 1 0 0 0 0 0 0 0 0 1 failurein obtaining viable donor thoracic organs. Because of the infrequent performance of Respiratorythoracic organ transplants results would not be expected to improve. failure secondary 0 0 0 0 0 1 0 0 0 0 0 0 1 toIn septicaemia 2008, no thoracic organ transplants were conducted. For end stage heart failure Respiratorypatients, a new approach to keep the patients alive while awaiting transplant has been failure, renal functionexplored and with the use of ventricular assist devices as a bridge to transplant. 0 0 0 1 0 0 0 0 0 0 0 0 1 liver failure, ARDS,2 patients reached their 10th anniversary following their transplants in 1998. septicaemia Septicaemia,The rest of the report that follows will review the results of heart and lung multiorgan 0 1 0 0 0 0 0 0 0 0 0 0 1 failuretransplantation in Malaysia till end of 2008. Graft failure 0 0 0 0 0 0 0 0 0 1 0 0 1 TOTAL patients who 0 1 0 2 0 1 1 0 0 1 0 0 6 died at discharge

Table 3.4.8a: Cause of Death at Follow-up, 1997-2008 Year 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL Cause of death No. No. No. No. No. No. No. No. No. No. No. No. No. Severe bleeding 0 0 0 0 0 1 0 0 0 0 0 0 1 Lung cancer, small cell type, 0 0 0 1 0 0 0 0 0 0 0 0 1 septicaemia, bronchopneumonia Rejection due to 0 0 0 0 1 0 0 0 0 0 0 0 1 non-compliance Unknown 0 0 0 0 0 1 0 0 0 0 0 0 1 TOTAL patients who died at 0 0 0 1 1 2 0 0 0 0 0 0 4 follow-up

8173 Fifth Fifth ReportFifth Report Report of the of of the the HEART HEART AND AND LUNG LUNG TRANSPLANTATION TRANSPLANTATION NationalNationalNational Transplant Trans Trans pRegistrylantplant Re Registr g2008istry 2008y 2008

LUNGList of TRANSPLANTATION Tables & HEART-LUNG TRANSPLANTATION Table 3.1.1a: Stock and Flow of Heart Transplantation, 1997-2008...... 74 3.1Table STOCK 3.2.1a: AND Distribution FLOW of Patients by Gender, 1997-2008 ...... 75 Table 3.2.2a: Distribution of Patients by Ethnic Group, 1997-2008 ...... 75 TableTable 3.1.1b: 3.2.3a: Stock Distribution and Flow of ofPatients Lung Transplantation,by Age, 1997-2008 2005-2008 ...... 75 YearTable 3.2.4a: Distribution of2005 Patie nts by Primary2006 Diagnosis, 1997-20082007 ...... 2008 75 NewTable transplant 3.3.1a: patients Distribution of Patie1 nts by Heart1 Procedure, 1997-2008...... 2 0 76 Deaths 0 1 1 0 RetransplantedTable 3.3.2a: Distribution of Patient0 s by Immunosuppres0 sive Used,0 1997-2008...... 0 76 LostTable to follow3.3.3a: up Immunosuppressive 0 Used at Time0 of Last Follow-up0 up to 2008...... 0 76 AliveTable at 3.3.4a:31st December Duration of Waiting1 Time on Waiting1 List, 1997-20082 ...... 2 77 Table 3.4.1a: Post Transplant Events at Last Follow-up up to 2008 ...... 78 Table 3.4.2a: Post Transplant Malignancies at Follow-up up to 2008 ...... 78 FigureTable 3.1.1b: 3.4.3a: StockNon-compliance and Flow of at Lung Follow-up Transplant up to and 2008 Heart...... Lung Transplant 79 Table 3.4.4a: Patient Treated for Rejection at Follow-up up to 2008...... 79 Table 3.4.5a: DistributionNew transplant of Patients patients by Time of Deaths, 1997-2008 ...... 79 Table 3.4.6a: Patient Survival, 1997-2008...... 80 Table 3.4.7a: Cause ofAlive Death at 31st at Discharge,Dec 1997-2008...... 81 Table 3.4.8a: Cause of Death at Follow-up, 1997-2008 ...... 81 Table 3.1.1b: Stock and Flow of Lung Transplantation, 2005-2008…………………..82 Table 3.2.1b: Distribution of Patients by Gender, 2005-2008…………………………83 Table 3.2.2b:4 Distribution of Patients by Ethnic Group, 2005-2008…………………..83 Table 3.2.3b: Distribution of Patients by Age, 2005-2008…………………………….83 Table 3.2.4b: Distribution of Patients by Primary Diagnosis, 2005 -2008…………….83 Table 3.3.1b: Distribution of Patients by Lung Procedure, 2005-2008………………..84 Table 3.3.3b: Immunosuppressive Used at Time Follow-up to 2008………………….84 Table 3.4.5b:2 Distribution of patients by time of deaths, 2005-2008………………….84

patients of Number List of Figures Figure 3.1.1a: Stock and Flow of Heart Transplantation, 1997-2008...... 74 Figure 3.4.6a:0 Patient Survival, 1997-2008……………………………………………80 Figure 3.1.1b: Stock2005 and Flow of 2006Lung Transplant2007 and Heart Lung2008 Transplant……....82

Year

82 72 FifthFifth Report Report of ofthe the NationalNational Trans Transplantplant Re gRegistryistry 2008 2008 HEART AND LUNG TRANSPLANTATION 3.23.0 RECIPIENT’SINTRODUCTION CHARACTERISTICS

TableFollowing 3.2.1b: the Distribution introduction of of Patients heart transplant by Gender, in 2005-20081997 and lung transplant in 2005, the numberYear of thoracic2005 organ transplants2006 has been2007 few and far 2008 between. The main limitationGender to the performanceNo. of heartNo. and lung transplantsNo. has beenNo. the lack of success inMale obtaining viable donor1 thoracic organs.1 Because1 of the infrequent0 performance of Female 0 0 1 0 TOTALthoracic organ transplants1 results would1 not be expected2 to improve. 0

In 2008, no thoracic organ transplants were conducted. For end stage heart failure patients,Table 3.2.2b: a new Distribution approach toof keepPatients the bypatients Ethnic alive Group, while 2005-2008 awaiting transplant has been exploredYear with the use2005 of ventricular2006 assi st devices as2007 a bridge to transplant.2008 Race No. No. No. No. th 2Malay patients reached their0 10 anniversary0 following th1eir transplants in0 1998. Chinese 0 0 0 0 IndianThe rest of the report1 that follows1 will review0 the results of0 heart and lung Ibantransplantation in Malaysia0 till end of0 2008. 1 0 TOTAL 1 1 2 0

Table 3.2.3b: Distribution of Patients by Age, 2005-2008

Year 2005 2006 2007 2008 Age(years) No. No. No. No. 0-19 0 0 1 0 20-39 0 1 1 0 40-59 1 0 0 0 60 0 0 0 0 TOTAL 1 1 2 0

Table 3.2.4b: Distribution of Patients by Primary Diagnosis, 2005 -2008 Year 2005 2006 2007 2008 Diagnosis No. No. No. No. Idiopathic pulmonary fibrosis 1 1 1 0 Idiopathic pulmonary arterial hypertension 0 0 1 0 Chronic obstructive pulmonary disease 0 0 0 0 Bronchiectasis 0 0 0 0 TOTAL 1 1 2 0

8373 Fifth Fifth ReportFifth Report Report of the of of the the HEART HEART AND AND LUNG LUNG TRANSPLANTATION TRANSPLANTATION NationalNationalNational Transplant Trans Trans pRegistrylantplant Re Registr g2008istry 2008y 2008

3.3List TRANSPLANT’S of Tables PRACTISES Table 3.1.1a: Stock and Flow of Heart Transplantation, 1997-2008...... 74 TableTable 3.3.1b: 3.2.1a: Distribution Distribution of of Patie Patientsnts by by Lung Gender, Procedure, 1997-2008 2005-2008 ...... 75 YearTable 3.2.2a: Distribution of Patients2005 by Ethnic2006 Group, 1997-20082008 ...... 2008 75 ProcedureTable 3.2.3a: Distribution of PatientsNo. by Age,No. 1997-2008 ...... No. No. 75 SingleTable Lung 3.2.4a: Transplant Distribution of Patie1 nts by Primary0 Diagnosis,0 1997-2008 ...... 0 75 Double Lung Transplant 0 1 1 0 HeartTable – Lung 3.3.1a: Transplant Distribution of Patie0 nts by Heart0 Procedure, 1997-2008...... 1 0 76 TOTALTable 3.3.2a: Distribution of Patient1 s by Immunosuppres1 sive2 Used, 1997-20080 ...... 76 Table 3.3.3a: Immunosuppressive Used at Time of Last Follow-up up to 2008...... 76 TableTable 3.3.3b 3.3.4a:: Immunosuppressive Duration of Waiting Used Time at on Time Waiting Follow-up List, 1997-2008 to 2008 ...... 77 YearTable 3.4.1a: Post Transplant Even2005ts at Last Follow-up2006 up2007 to 2008 ...... 2008 78 ImmunosuppresiveTable 3.4.2a: Post drug Transplants MalignanciesNo. atNo. Follow-up upNo. to 2008 ...... No. 78 Steroids:Table 3.4.3a: Non-compliance at Follow-up up to 2008 ...... 79 TablePrednisolone 3.4.4a: Patient Treated for Re1jection at Follow-up2 up2 to 2008...... 1 79 TableMethylprednisolone 3.4.5a: Distribution of Patients1 by Time of1 Deaths, 1997-20082 ...... 0 79 Antimetabolites: TableAzathioprine(AZA) 3.4.6a: Patient Survival, 1997-20080 ...... 0 0 0 80 TableMycophenolate 3.4.7a: (MMF)Cause of Death at Discharge,1 1997-20082 ...... 3 2 81 NeoralTable 3.4.8a: Cause of Death at Follow-up,1 1997-20082 ...... 3 0 81 TacrolimusTable 3.1.1b: Stock and Flow of Lung0 Transplantation,0 2005-2008…………………..820 2 TOTALTable 3.2.1b:patients Distributionat follow -up of Patients1 by Gender,2 2005-2008…………………………833 2 Table 3.2.2b: Distribution of Patients by Ethnic Group, 2005-2008…………………..83 Table 3.2.3b: Distribution of Patients by Age, 2005-2008…………………………….83 3.4Table TRANSPLANT’S 3.2.4b: Distribution OUTCOMES of Patients by Primary Diagnosis, 2005 -2008…………….83 Table 3.3.1b: Distribution of Patients by Lung Procedure, 2005-2008………………..84 TableTable 3.4.5b: 3.3.3b Distribution: Immunosuppressive of patients Used by time at Time of deaths, Follow-up 2005-2008 to 2008………………….84 YearTable 3.4.5b: Distribution of pa2005tients by time2006 of deaths, 2005-2008………………….842007 2008 Death No. No. No. No. < 3 months 0 1 1 0 3 - < 6 months 0 0 0 0 6 List– 12 monthsof Figures 0 0 0 0 > Figure12 months 3.1.1a: Stock and Flow of0 Heart Transplantation,0 1997-2008...... 0 0 74 TOTALFigure 3.4.6a: Patient Survival, 1997-2008……………………………………………800 1 1 0 Figure 3.1.1b: Stock and Flow of Lung Transplant and Heart Lung Transplant……....82

84 72 CHAPTER 4

LIVER TRANSPLANTATION

Editor: Dr Ganesalingam A/L Kanagasabai

Expert panel: Dr Ganesalingam A/L Kanagasabai (Chairperson) Professor Dr Lee Way Seah Dr Lim Chooi Bee Dr Lim Kin Foong Dr Haniza Binti Omar

Contents

4.0 Introduction

4.1 Stock and Flow of Liver Transplantation

4.2 Recipients’ Characteristics x Demographics x Primary Diagnosis

4.3 Transplant Practices x Type of Transplant x Immunosuppressive Therapy

4.4 Transplant Outcomes x Patient Survival x Causes of Death

Fifth Report of the LIVER TRANSPLANTATION National TransplantFifth ReportFifth Registry Reportof the 2008 of the LIVER TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008

List of Tables List of Tables Table 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008...... 87 TableTable 4.1.2 4.1.1 Distribution Stock and of Flow Patients of Liver by Place Transplantation, of Transplant, 1993-2008...... 87 1993-2008...... 88 TableTable 4.1.3 4.1.2 Distribution Distribution of Paof tientsPatients by byCentres Place for of Transplant,Liver Transplantation, 1993-2008...... 88 1993-2008...... 88 TableTable 4.2.1 4.1.3 Distribution Distribution of Patientsof Patients by byGender, Centres 1993-2008...... 89 for Liver Transplantation, 1993-2008...... 88 TableTable 4.2.2 4.2.1 Distribution Distribution of Paof tientsPatients by byEthnic Gender, Group, 1993-2008...... 89 1993-2008...... 90 TableTable 4.2.3 4.2.2 Distribution Distribution of Patientsof Patients by byAge, Ethnic 1993-2008...... 91 Group, 1993-2008...... 90 TableTable 4.2.4 4.2.3 Primary Distribution Diagnosis, of Patients 1993-2008 by Age, (N=100)...... 92 1993-2008...... 91 TableTable 4.2.5 4.2.4 Indication Primary for Diagnosis, Transplantation, 1993-2008 1993-2008 (N=100)...... 92 (N=100)...... 92 TableTable 4.2.6 4.2.5 Recipients Indication’ Blood for Transplantation, Group, 1993-2008 1993-2008 ...... 93 (N=100)...... 92 TableTable 4.3.1 4.2.6 Distribution Recipients of’ BloodPatient Group,s by Type 1993-2008 of Donors, ...... 93 1993-2008...... 94 TableTable 4.3.2 4.3.1 Immunosuppresive Distribution of Patient Drug sTreatment by Type of at Donors,Transplantation, 1993-2008...... 94 1993-2008 (N=100).....94 TableTable 4.4.1 4.3.2 Patient Immunosuppresive Survival by Year Drug of Transplant,Treatment at1993-2008 Transplantation, (N=100)...... 95 1993-2008 (N=100).....94 TableTable 4.4.2 4.4.1 Patient Patient Survival Survival by byGender, Year of1993-2008 Transplant, (N=100)...... 96 1993-2008 (N=100)...... 95 TableTable 4.4.3 4.4.2 Patient Patient Survival Survival by byAge Gender, Group, 1993-2008 1993-2008 (N=100)...... 96 (N=100)...... 97 TableTable 4.4.4 4.4.3 Distribution Patient Survival of Patients by Age by CauseGroup, of 1993-2008 Death, 1993-2008 (N=100)...... 97 (N=100)...... 98 Table 4.4.4 Distribution of Patients by Cause of Death, 1993-2008 (N=100)...... 98

List of Figures List of Figures Figure 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008...... 87 FigureFigure 4.2.1 4.1.1 Distribution Stock and of Flow Patients of Liver by Gender, Transplantation, 1993-2008...... 89 1993-2008...... 87 FigureFigure 4.2.2 4.2.1 Distribution Distribution of Paof tientsPatients by byEthnic Gender, Group, 1993-2008...... 89 1993-2008...... 90 FigureFigure 4.4.1 4.2.2 Patient Distribution Survival of by Pa Yeartients of by Transplant, Ethnic Group, 1993-2008...... 95 1993-2008...... 90 FigureFigure 4.4.2 4.4.1 Patient Patient Surviv Survivalal by byGender, Year of1993-2008...... 96 Transplant, 1993-2008...... 95 FigureFigure 4.4.3 4.4.2 Patient Patient Surv Survivival byal byAge Gender, Group, 1993-2008...... 96 1993-2008...... 97 Figure 4.4.3 Patient Survival by Age Group, 1993-2008...... 97

86 86

Fifth Report of the FifthNational ReportFifth TransplantofReport the of the Registry 2008 LIVER TRANSPLANTATION NationalNational Transplant Transplant Registry Registry 2008 2008 LIVER TRANSPLANTATION

4.1 STOCK AND FLOW 4.1 STOCK AND FLOW The number of liver transplants performed from 1993 to 2008 is one hundred. Eighty six The(86%) number were of performed liver transplants locally performedand fourteen from (14%) 1993 were to 2008performed is one at hundred. overseas Eightycentres. six Five (86%)new were liver performedtransplants locallywere done and infourteen 2008 and (14%) they werewere performedall done locally at overseas at Selayang centres. Hospital. Five new liver transplants were done in 2008 and they were all done locally at Selayang Hospital.

Table 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008 TableYear 4.1.1 Stock and Flow93 of94 Liver 95 Transplantation,96 97* 98 99 1993-2008 00 01 02 03** 04 05 06 07 08 YearNew transplant patients93 194 195 896 1397* 3 98 299 800 301 502 1003** 5 04 1605 506 807 708 5 NewDeaths transplant patients 1 0 1 0 8 313 4 3 1 2 1 8 4 3 1 5 210 5 5 1 16 5 5 6 8 3 7 2 5 2 DeathsRe-Transplant 0 0 0 0 3 0 4 0 1 0 1 0 4 0 1 0 2 0 5 0 1 0 5 0 6 0 3 0 2 0 2 0 Re-TransplantLost to follow up 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 0 0 1 0 0 0 0 0 0 LostFunctioning to follow up graft at 0 0 0 0 0 0 0 1 0 1 0 0 1 0 0 0 1 2 7 16 18 19 23 24 27 31 35 46 44 49 54 57 Functioning31st December graft at 1 2 7 16 18 19 23 24 27 31 35 46 44 49 54 57 31st*1 December patient who was alive until 05/12/1997 is recorded dead with missing date of death *1 patient** 1 patient who wastransplanted alive until in 05/12/1997 2003 is recorded is recorded as dead dead with with missing missing date date of deathof death ** 1 patient transplanted in 2003 is recorded as dead with missing date of death

Figure 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008 Figure 4.1.1 Stock and New Flow patients of Liver Transplantation, 1993-2008 Alive at 31st Dec 60 New patients Alive at 31st Dec 60 55 55 50 50 45 45 40 40 35 35 30 30 25 25

umber of patients (n) 20 N

umber of patients (n) 20

N 15 15 10 10 5 5 0 1993 1995 1997 1999 2001 2003 2005 2007 0 1993 19941995 19961997 19981999 20002001 20022003 20042005 20062007 2008 1994 1996 1998 Year2000 2002 2004 2006 2008 Year

87 87

TableList 4.1.2 of Tables Distribution of Patients by Place of Transplant, 1993-2008 Year (No.) Place of Transplant Table 4.1.1 Stock 93and 94Flow 95 of 96Liver 97 Transplantation, 98 99 00 01 1993-2008...... 87 02 03 04 05 06 07 08 TOTAL LocalTable 4.1.2 Distribution0 0 of 8Patients 10 1by Place1 8 of Transplant,3 5 9 1993-2008...... 882 14 5 8 7 5 86 OverseasTable 4.1.3 Distribution1 1 of 0Pa tients3 2by Centres1 0 for0 Liver0 Transplantation,1 3 2 0 1993-2008...... 880 0 0 14 TOTALTable 4.2.1 Distribution1 1 of 8Patients 13 3by Gender,2 8 1993-2008...... 893 5 10 5 16 5 8 7 5 100 Table 4.2.2 Distribution of Patients by Ethnic Group, 1993-2008...... 90 Table 4.2.3 Distribution of Patients by Age, 1993-2008...... 91 TableTable 4.1.3 4.2.4 Distribution Primary Diagnosis, of Patients 1993-2008 by Centres (N=100)...... 92 for Liver Transplantation, 1993-2008 Table 4.2.5 Indication for Transplantation, 1993-2008 (N=100)...... 92Year (No.) Transplant Centre Table 4.2.6 Recipients93’ Blood94 95 Group, 96 971993-2008 98 99 ...... 9300 01 02 03 04 05 06 07 08 TOTAL Sime Darby Medical Table 4.3.1 Distribution0 of0 Patient8 10s by 1Type 1 of 8Donors, 3 51993-2008...... 94 6 2 7 0 0 0 0 51 Centre,Table Subang 4.3.2 JayaImmunosuppresive Drug Treatment at Transplantation, 1993-2008 (N=100).....94 HospitalTable Selayang4.4.1 Patient Survival0 0 by0 Year0 of0 Transplant,0 0 01993-2008 0 3 (N=100)...... 950 7 5 8 7 5 35 University of Malaya Table 4.4.2 Patient Survival0 0 by0 Gender,0 0 1993-20080 0 0(N=100)...... 96 0 0 0 0 0 0 0 0 0 Medical Centre RoyalTable Children's 4.4.3 Patient Survival by Age Group, 1993-2008 (N=100)...... 97 0 0 0 2 1 0 0 0 0 0 0 0 0 0 0 0 3 Hospital,Table 4.4.4Brisbane Distribution of Patients by Cause of Death, 1993-2008 (N=100)...... 98 National University 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 2 Hospital, Singapore QueenslandList of Figures Liver Transplant Service, 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 2 Australia KingsFigure College 4.1.1 Hospital, Stock and Flow of Liver Transplantation, 1993-2008...... 87 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 UKFigure 4.2.1 Distribution of Patients by Gender, 1993-2008...... 89 Tianjin,Figure China 4.2.2 Distribution0 of0 Pa0tients 0 by0 Ethnic0 Group,0 0 1993-2008...... 900 0 1 1 0 0 0 0 2 AsianFigure Centre 4.4.1 for LiverPatient Survival by Year of Transplant, 1993-2008...... 95 Disease & Figure 4.4.2 Patient Surviv0 0 al by0 Gender,0 0 1993-2008...... 960 0 0 0 1 2 1 - - - - 4 Transplantation,Figure 4.4.3 Patient Survival by Age Group, 1993-2008...... 97 Singapore TOTAL 1 1 8 13 3 2 8 3 5 10 5 16 5 8 7 5 100

88 86

4.2 RECIPIENTS’ CHARACTERISTICS 4.1 STOCK AND FLOW Fifty four (54%) were males and 46 (46%) were females. The ethnic distribution of the liver Thetransplant number of recipients liver transplants are as follows: performed Chines frome 51 1993 (51%), to 2008 Malays is one 39 (39%), hundred. Indians Eighty 8 six (8%), (86%)Others were 2 (2%).performed locally and fourteen (14%) were performed at overseas centres. Five new liver transplants were done in 2008 and they were all done locally at Selayang Hospital. Eighty (80%) of the transplant recipients were between 1 and 9 years of age at the time of transplantation. Biliary atresia was the primary liver disease in 72 (72%) of the recipients. TableThe 4.1.1 commonest Stock and indication Flow of Liver for Transplantation, liver transplant ation1993-2008 was failure to thrive with growth Yearretardation and poor93 liver 94 function.95 96 The97* commo98 99nest 00 blood 01 group02 03** amongst 04 the05 liver06 transplant07 08 Newrecipients transplant patientswas group 1 O (38%).1 8 13 3 2 8 3 5 10 5 16 5 8 7 5 Deaths 0 0 3 4 1 1 4 1 2 5 1 5 6 3 2 2 Re-TransplantTable 4.2.1 Distribution0 0of Patients0 0 by0 Gender, 0 01993-2008 0 0 0 0 0 0 0 0 0 Lost to follow up 0 0 0 0 0 0 Year0 1(No.) 0 1 0 0 1 0 0 0 Gender Functioning graft at 93 94 195 296 797 1698 1899 1900 2301 2402 2703 31 04 3505 4606 4407 4908 54TOTAL 57 31stMale December 0 0 6 5 2 1 3 1 2 7 5 10 2 6 3 1 54 *1 patientFemale who was1 alive1 until2 05/12/19978 1 is recorded1 5 dead2 with3 missing3 date0 of6 death3 2 4 4 46 ** 1 patient transplanted in 2003 is recorded as dead with missing date of death TOTAL 1 1 8 13 3 2 8 3 5 10 5 16 5 8 7 5 100

FigureFigure 4.1.1 4.2.1 Stock Distribution and Flow ofof PatientsLiver Transplantation, by Gender, 1993-2008 1993-2008 Male Female New patients Alive at 31st Dec 10 60

55 50 8 45 40 6 35 30

25 4 umber of patients (n) umber of patients (n) N 20 N 15 2 10 5 0 0 1993 1995 1997 1999 2001 2003 2005 2007 1993 19941995 19961997 19981999 20002001 20022003 20042005 20062007 2008 1994 1996 1998 2000 2002 2004 2006 2008 Year Year

89 87

Table 4.2.2 Distribution of Patients by Ethnic Group, 1993-2008 List of Tables Year (No.) Ethnic group 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL MalayTable 4.1.1 Stock0 1 and2 Flow3 of1 Liver 0 Transplantation,4 1 2 3 1993-2008...... 871 11 3 3 2 2 39 ChineseTable 4.1.2 Distribution1 0 6 of8 Patients2 1 by Place2 2 of Transplant,3 6 4 1993-2008...... 885 1 3 4 3 51 IndianTable 4.1.3 Distribution0 0 0 of2 Patients0 1 by Centres1 0 for0 Liver0 Transplantation,0 0 1 2 1993-2008...... 881 0 8 OthersTable 4.2.1 Distribution0 0 0 of0 Patients0 0 by Gender,1 0 1993-2008...... 890 1 0 0 0 0 0 0 2 TOTALTable 4.2.2 Distribution1 1 8 of13 Patients3 2 by Ethnic8 3 Group,5 10 1993-2008...... 90 5 16 5 8 7 5 100 Table 4.2.3 Distribution of Patients by Age, 1993-2008...... 91 Table 4.2.4 Primary Diagnosis, 1993-2008 (N=100)...... 92 FigureTable 4.2.2 4.2.5 Distribution Indication offor Pa Transplantation,tients by Ethnic 1993-2008 Group, 1993-2008 (N=100)...... 92 Table 4.2.6 Recipients Malay ’ Blood Group, 1993-2008 ...... 93 Chinese Table 4.3.1 Distribution Indian of Patients by Type of Donors, Others 1993-2008...... 94 Table 4.3.212 Immunosuppresive Drug Treatment at Transplantation, 1993-2008 (N=100).....94 Table 4.4.1 Patient Survival by Year of Transplant, 1993-2008 (N=100)...... 95 Table 4.4.2 Patient Survival by Gender, 1993-2008 (N=100)...... 96 Table 4.4.310 Patient Survival by Age Group, 1993-2008 (N=100)...... 97 Table 4.4.4 Distribution of Patients by Cause of Death, 1993-2008 (N=100)...... 98 8

List of Figures 6 Figure 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008...... 87

umber of patients (n) patients of umber Figure 4.2.1 Distribution of Patients by Gender, 1993-2008...... 89 N Figure 4.2.24 Distribution of Patients by Ethnic Group, 1993-2008...... 90 Figure 4.4.1 Patient Survival by Year of Transplant, 1993-2008...... 95 Figure 4.4.2 Patient Survival by Gender, 1993-2008...... 96 Figure 4.4.32 Patient Survival by Age Group, 1993-2008...... 97

0 1993 1995 1997 1999 2001 2003 2005 2007 1994 1996 1998 2000 2002 2004 2006 2008 Year

90 86

Table 4.2.3 Distribution of Patients by Age, 1993-2008 4.1Age STOCK AND FLOW Year (No.) Group* 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL The<1 number 0 of liver0 0 transplants 0 0 performed1 0 from0 19930 to0 20080 is one0 0 hundred. 0 0 Eighty0 six1 (86%)1-4 were performed1 1 3 locally11 3 and fourteen1 5 (14%)3 4were performed5 2 at9 overseas2 4 centres.3 1 Five58 new5-9 liver transplants0 0 were3 1 done0 in 20080 and2 they0 were1 all 3done locally1 3 at 3Selayang 1 2 Hospital.1 21 10-14 0 0 1 1 0 0 0 0 0 0 0 1 0 1 1 0 5 15-19 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 0 2 Table20-39 4.1.1 Stock0 0and 1 Flow 0 of0 Liver 0Transplantation, 0 0 0 1993-20081 0 0 0 2 1 3 8 40-59 0 0 0 0 0 0 0 0 0 1 1 1 0 0 0 0 3 Year 93 94 95 96 97* 98 99 00 01 02 03** 04 05 06 07 08 60 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 2 New transplant patients 1 1 8 13 3 2 8 3 5 10 5 16 5 8 7 5 TOTAL 1 1 8 13 3 2 8 3 5 10 5 16 5 8 7 5 100 Deaths 0 0 3 4 1 1 4 1 2 5 1 5 6 3 2 2 Mean 2 4 9 4 2 1 4 1 2 10 27 12 4 12 10 17 9 Re-Transplant 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 SD - - 9 4 1 1 5 0 2 14 33 22 3 15 13 10 14 Lost to follow up 0 0 0 0 0 0 0 1 0 1 0 0 1 0 0 0 Median 2 4 5 2 2 1 2 1 2 4 9 3 5 4 5 23 3 Functioning graft at 1 2 7 16 18 19 23 24 27 31 35 46 44 49 54 57 31stMinimum December 2 4 2 2 1 3 months 1 1 1 4 months 1 1 1 2 2 2 3 months *1 patientMaximum who was2 alive4 until30 1405/12/1997 2 is1 recorded 15 dead2 with5 missing46 date 73of death74 8 39 37 26 74 ** 1* patientAge=date transplanted if transplant in 2003 – date is ofrecorded birth as dead with missing date of death

Figure 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008 New patients Alive at 31st Dec 60

55 50

45 40

35 30

umber of patients (n) 20 N 15 10 5

0 1993 1995 1997 1999 2001 2003 2005 2007 1994 1996 1998 2000 2002 2004 2006 2008 Year

91 87

List of Tables

Table 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008...... 87 Table 4.1.2 Distribution of Patients by Place of Transplant, 1993-2008...... 88 Table 4.1.3 Distribution of Patients by Centres for Liver Transplantation, 1993-2008...... 88 Table 4.2.1 Distribution of Patients by Gender, 1993-2008...... 89 Table 4.2.2 Distribution of Patients by Ethnic Group, 1993-2008...... 90 Table 4.2.3 Distribution of Patients by Age, 1993-2008...... 91 Table 4.2.4 Primary Diagnosis, 1993-2008 (N=100)...... 92 Table 4.2.5 Indication for Transplantation, 1993-2008 (N=100)...... 92 Table 4.2.6 Recipients’ Blood Group, 1993-2008 ...... 93 Table 4.3.1 Distribution of Patients by Type of Donors, 1993-2008...... 94 Table 4.3.2 Immunosuppresive Drug Treatment at Transplantation, 1993-2008 (N=100).....94 Table 4.4.1 Patient Survival by Year of Transplant, 1993-2008 (N=100)...... 95 Table 4.4.2 Patient Survival by Gender, 1993-2008 (N=100)...... 96 Table 4.4.3 Patient Survival by Age Group, 1993-2008 (N=100)...... 97 Table 4.4.4 Distribution of Patients by Cause of Death, 1993-2008 (N=100)...... 98

List of Figures

Figure 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008...... 87 Figure 4.2.1 Distribution of Patients by Gender, 1993-2008...... 89 Figure 4.2.2 Distribution of Patients by Ethnic Group, 1993-2008...... 90 Figure 4.4.1 Patient Survival by Year of Transplant, 1993-2008...... 95 Figure 4.4.2 Patient Survival by Gender, 1993-2008...... 96 Figure 4.4.3 Patient Survival by Age Group, 1993-2008...... 97

92 86

Table 4.2.6 Recipients’ Blood Group, 1993-2008 4.1 STOCK AND FLOW Year (No.) Blood group 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL TheA number of liver0 1 transplants 2 0 performed0 0 3 from0 19931 to3 20081 is4 one1 hundred.4 2 Eighty1 six23 (86%)B were performed0 0 locally1 2a nd 0fourteen 1 2(14%) 0 were1 performed1 0 1 at overseas1 3 3centres. 1 Five17 newAB liver transplants0 were0 0done 1 in 20080 1and 0they 0were 0 all 0done 0 locally1 at1 Selayang0 0 Hospital.0 4 O 0 0 2 5 1 0 3 3 3 5 1 8 2 1 2 2 38 No Data 1 0 3 5 2 0 0 0 0 1 3 2 0 0 0 1 18 TableTOTAL 4.1.1 Stock1 and 1Flow 8 of 13Liver 3 Transplantation,2 8 3 51993-2008 10 5 16 5 8 7 5 100 Year 93 94 95 96 97* 98 99 00 01 02 03** 04 05 06 07 08 New transplant patients 1 1 8 13 3 2 8 3 5 10 5 16 5 8 7 5 Deaths 0 0 3 4 1 1 4 1 2 5 1 5 6 3 2 2 Re-Transplant 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Lost to follow up 0 0 0 0 0 0 0 1 0 1 0 0 1 0 0 0 Functioning graft at 1 2 7 16 18 19 23 24 27 31 35 46 44 49 54 57 31st December *1 patient who was alive until 05/12/1997 is recorded dead with missing date of death ** 1 patient transplanted in 2003 is recorded as dead with missing date of death

Figure 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008 New patients Alive at 31st Dec 60

55 50

45 40

35 30

umber of patients (n) 20 N 15 10 5

0 1993 1995 1997 1999 2001 2003 2005 2007 1994 1996 1998 2000 2002 2004 2006 2008 Year

93 87

4.3 TRANSPLANT PRACTICES List of Tables Seventy five (75%) of liver transplants were living donors while twenty five (25%) were fromTable cadaveric 4.1.1 Stock donors. and 62% Flow of of living Liver donorsTransplantation, were first 1993-2008...... 87degree relatives with mother to child beingTable the 4.1.2 most Distribution common. of The Patients immunosuppressive by Place of Transplant, medications 1993-2008...... 88 most commonly used are tacrolimusTable 4.1.3 and Distribution steroids. of Patients by Centres for Liver Transplantation, 1993-2008...... 88 Table 4.2.1 Distribution of Patients by Gender, 1993-2008...... 89 TableTable 4.3.1 4.2.2 Distribution Distribution of Patientof Patientss by byType Ethnic of Donors, Group, 1993-20081993-2008...... 90 Table 4.2.3 Distribution of Patients by Age, 1993-2008...... 91 Year (No.) TypeTable of donor 4.2.4 Primary Diagnosis, 1993-2008 (N=100)...... 92 Table 4.2.5 Indication93 94 for 95Transplantation, 96 97 98 1993-200899 00 01 (N=100)...... 92 02 03 04 05 06 07 08 TOTAL Table 4.2.6 Recipients’ Blood Group, 1993-2008 ...... 93 CadavericTable 4.3.1 Distribution1 0 of0 Patient 3 s 1by Type0 0of Donors,0 0 1993-2008...... 941 1 4 2 4 4 4 25 LivingTable Related 4.3.2 - Immunosuppresive Drug Treatment at Transplantation, 1993-2008 (N=100).....94 0 1 5 2 1 2 5 2 2 2 2 7 1 1 0 0 33 MotherTable 4.4.1 Patient Survival by Year of Transplant, 1993-2008 (N=100)...... 95 Living Related - Table 4.4.2 Patient0 Survival0 2 by7 Gender, 1 01993-2008 2 0 (N=100)...... 962 3 0 1 1 3 3 1 26 FatherTable 4.4.3 Patient Survival by Age Group, 1993-2008 (N=100)...... 97 Living Related - 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 DaughterTable 4.4.4 Distribution of Patients by Cause of Death, 1993-2008 (N=100)...... 98 Living Related - 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 2 Son Living Related - List of Figures 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 1 Brother Living Related - Figure 4.1.1 Stock0 and0 Flow0 of0 Liver 0 Transplantation,0 0 0 0 1993-2008...... 870 0 0 0 0 0 0 0 Sister LivingFigure Related 4.2.1 - Distribution of Patients by Gender, 1993-2008...... 89 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 MonozygoticFigure 4.2.2 twin Distribution of Patients by Ethnic Group, 1993-2008...... 90 LivingFigure Related 4.4.1 - Patient Survival by Year of Transplant, 1993-2008...... 95 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 DizygoticFigure twin4.4.2 Patient Survival by Gender, 1993-2008...... 96 Living Related - Figure 4.4.3 Patient0 Surv0 ival0 by0 Age0 Group,0 01993-2008...... 97 0 0 0 0 0 1 0 0 0 1 Others Living Related - 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 1 Emotionally Living Unrelated 0 0 1 1 0 0 1 1 1 3 0 3 0 0 0 0 11

TOTAL patients 1 1 8 13 3 2 8 3 5 10 5 16 5 8 7 5 100

Table 4.3.2 Immunosuppresive Drug Treatment at Transplantation, 1993-2008 (N=100) Immunosuppressive Year (No.) drugs 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 TOTAL Steroids 0 0 2 5 0 2 5 2 5 5 1 12 5 8 6 5 63 Azathioprine 0 0 0 0 0 0 0 0 0 0 0 4 5 8 4 2 23 Cyclosporin A 1 1 1 2 0 0 0 1 0 0 0 0 0 0 0 0 6 Tacrolimus (FK506) 0 0 3 7 2 2 8 2 5 9 5 12 5 8 5 4 77 Mycophenolate Mofetil 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 (MMF) Rapamycin 0 0 0 0 0 0 0 0 0 1 2 0 0 0 0 0 3 Monoclonal/Polyclonal 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Antiodies Anti IL26 Antibodies 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Others 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 No Data 0 0 4 3 1 0 0 0 0 1 0 4 0 0 1 0 14 TOTAL patients 1 1 8 13 3 2 8 3 5 10 5 16 5 8 7 5 100 Note: 22 patients had 1 type if drug, 41 patients had 2 types, 23 patients had 3 types

94 86

4.4 TRANSPLANT OUTCOMES 4.1 STOCK AND FLOW The 1 year survival rate for the period 1993 - 1998 and 1999 - 2007 was 71% and 69% Therespectively. number of The liver most transplants common performed cause of death from was 1993 sepsis. to 2008 is one hundred. Eighty six (86%) were performed locally and fourteen (14%) were performed at overseas centres. Five newTable liver 4.4.1 transplants Patient were Survival done by in Year2008 ofand Transplant, they were 1993-2008all done locally (N=100) at Selayang Hospital. Year of transplant Interval (months) 1993-1998 1999-2008 Table 4.1.1 Stock and Flow of% Liver Survival Transplantation, SE 1993-2008% Survival SE Year 1 93 94 95 8296 97* 98 997 00 01 02 03**82 04 05 065 07 08 New transplant patients6 1 1 8 7113 3 2 89 3 5 10 705 16 5 85 7 5 Deaths 12 0 0 3 71 4 1 1 49 1 2 5 691 5 6 36 2 2 Re-Transplant 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Lost to follow up 0 0 0 0 0 0 0 1 0 1 0 0 1 0 0 0 Functioning graft at Figure 4.4.1 Patient 1Survival 2 7 by Year16 18of Transplant,19 23 24 1993-2008 27 31 35 46 44 49 54 57 31st December *1 patient who was alive until 05/12/1997Patient Survival is recorded by dead Transplant with missing Year date of death ** 1 patient transplanted in 2003 is recorded as dead with missing date of death

1.00

Figure 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008 New patients Alive at 31st Dec 0.75 60

500.50

45 40 Cumulative Survival Cumulative 0.25 35 30

250.00 0 2 4 6 8 10 12 umber of patients (n) 20 Duration in months N 15 Year 1993-1998 Year 1999-2008 10 5

0 1993 1995 1997 1999 2001 2003 2005 2007 1994 1996 1998 2000 2002 2004 2006 2008 Year

95 87

Table 4.4.2 Patient Survival by Gender, 1993-2008 (N=100) List of Tables Gender Interval (months) Male Female Table 4.1.1 Stock and Flow% Survival of Liver Transplantation,SE 1993-2008...... 87% Survival SE Table 4.1.21 Distribution of Patients83 by Place of5 Transplant, 1993-2008...... 8880 6 Table 4.1.36 Distribution of Pa72tients by Centres6 for Liver Transplantation,69 1993-2008...... 887 Table 4.2.112 Distribution of Patients70 by Gender,6 1993-2008...... 8969 7 Table 4.2.2 Distribution of Patients by Ethnic Group, 1993-2008...... 90 Table 4.2.3 Distribution of Patients by Age, 1993-2008...... 91 FigureTable 4.4.2 4.2.4 Patient Primary Survival Diagnosis, by Gender, 1993-2008 1993-2008 (N=100)...... 92 Table 4.2.5 Indication for Transplantation, 1993-2008 (N=100)...... 92 Table 4.2.6 Recipients’ Blood Group, 1993-2008 ...... 93 Table 4.3.1 Distribution ofPatient Patient Survivals by Type by of Gender Donors, 1993-2008...... 94

Table1.00 4.3.2 Immunosuppresive Drug Treatment at Transplantation, 1993-2008 (N=100).....94 Table 4.4.1 Patient Survival by Year of Transplant, 1993-2008 (N=100)...... 95 Table 4.4.2 Patient Survival by Gender, 1993-2008 (N=100)...... 96 Table 4.4.3 Patient Survival by Age Group, 1993-2008 (N=100)...... 97 Table0.75 4.4.4 Distribution of Patients by Cause of Death, 1993-2008 (N=100)...... 98

List 0.50 of Figures

Figure 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008...... 87

Cumulative Survival Cumulative Figure 4.2.1 Distribution of Patients by Gender, 1993-2008...... 89 Figure0.25 4.2.2 Distribution of Patients by Ethnic Group, 1993-2008...... 90 Figure 4.4.1 Patient Survival by Year of Transplant, 1993-2008...... 95 Figure 4.4.2 Patient Survival by Gender, 1993-2008...... 96 Figure 4.4.3 Patient Survival by Age Group, 1993-2008...... 97 0.00 0 2 4 6 8 10 12 Duration in months Male Female

96 86

Table 4.4.3 Patient Survival by Age Group, 1993-2008 (N=100) 4.1 STOCK AND FLOW Age Group Interval (months) 0-9 years 10 years The number of liver transplants% Survival performed from SE 1993 to 2008% isSurvival one hundred. SE Eighty six (86%) were performed1 locally and81 fourteen (14%)5 were performed85 at overseas centres.8 Five new liver transplants6 were done in70 2008 and they were5 all done locally80 at Selayang Hospital.9 12 70 5 74 10

Table 4.1.1 Stock and Flow of Liver Transplantation, 1993-2008 YearFigure 4.4.3 Patient93 Surv 94ival 95 by Age96 97*Group, 98 1993-200899 00 01 02 03** 04 05 06 07 08 New transplant patients 1 1 8 13 3 2 8 3 5 10 5 16 5 8 7 5 Deaths 0 0 Patient3 4 Survival1 1by Age4 Group1 2 5 1 5 6 3 2 2 Re-Transplant 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1.00 Lost to follow up 0 0 0 0 0 0 0 1 0 1 0 0 1 0 0 0 Functioning graft at 1 2 7 16 18 19 23 24 27 31 35 46 44 49 54 57 31st December *1 patient who was alive until 05/12/1997 is recorded dead with missing date of death ** 1 patient 0.75 transplanted in 2003 is recorded as dead with missing date of death

Figure 4.1.10.50 Stock and Flow of Liver Transplantation, 1993-2008 New patients Alive at 31st Dec 60 Cumulative Survival Cumulative

550.25 50

45 0.00 40 0 2 4 6 8 10 12 Duration in months 35 30 0-9 years 10 years

umber of patients (n) 20 N 15 10 5

0 1993 1995 1997 1999 2001 2003 2005 2007 1994 1996 1998 2000 2002 2004 2006 2008 Year

97 87

List of Tables

List of Figures

98 86

CHAPTER 5

RENAL TRANSPLANTATION

Editor: Dr. Goh Bak Leong

Expert Panel: Dato’ Dr. Zaki Morad b Mohd Zaher (Chair) Dr. Goh Bak Leong (Co-Chair) Dr. Fan Kin Sing Dr. Lily Mushahar Mr. Rohan Malek Dr. S. Prasad Menon Prof. Dr. Tan Si Yen

Contents

5.1 Stock and Flow of Renal Transplantation x Stock and Flow x Transplant Rates x Places of Transplant

5.2 Recipients’ Characteristics x Demographics, Clinical and Serology Status x Primary Causes of ESRF

5.3 Transplant Practices x Type of Transplant x Immunosuppressive Therapy and Other Medications

5.4 Transplant Outcomes x Post Transplantation Complications x Death and Graft Loss

5.5 Patient and Graft Survival

5.6 Cardiovascular Risk in Renal Transplant Recipients

5.7 QoL Index Score in Renal Transplant Recipients Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008 Table 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008…………………………………….…124List of Tables

Table 5.1.1: Stock and Flow of Renal Transplantation, 1999-2008………………… 102 List of Figures Table 5.1.2: New Transplant Rate per million population (pmp), 1999-2008……… 103 Table 5.1.3: Transplant Prevalence Rate per million population (pmp), 1999-2008.. 103 Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102Table 5.1.4: Place of Transplantation, 1999-2008…………………………………...104 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103Table 5.2.1: Renal Transplant Recipients’ Characteristics, 1999-2008…………….. 105 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104Table 5.2.2: Primary Causes of End Stage Renal Failure, 1999-2008……………… 105 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110Table 5.3.1: Type of Renal Transplantation, 1999-2008…………………………… 106 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110Table 5.3.2: Biochemical Data, 2006-2008………………………………………… 106 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112Table 5.3.3: Medication Data, 2006-2008………………………………………….. 108 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112Table 5.4.1: Post-transplant Complications, 2006-2008……………………………..109 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008…………………..Table 5.4.2: Transplant .113 Patients Death Rate and Graft Loss, 1999-2008………….. 110 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113Table 5.4.3: Causes of Death in Transplant Recipients, 1999-2008………………... 111 Figure 5.5.5: Patient Survival by Year of Transplant (Living RelatedTable 5.4.4: Transplant, Causes 1995-of Graft Failure, 1999-2008…………………………………… 111 2008)…………………………………………………………………...Table 5.5.1: Patient Survival, 114 1995-2008…………………………………………… 112 Figure 5.5.6: Graft Survival by Year of Transplant (Living RelatedTable Transplant,5.5.2: Graft 1995-Survival, 1995-2008……………………………………………...112 2008)…………………………………………………………………...Table 5.5.3: Patient Survival 114 by Type of Transplant, 1995-2008……………………113 Figure 5.5.7: Patient Survival by Year of Transplant (CommercialTable Cadaver 5.5.4: Graft Transplant, Survival by Type of Transplant, 1995-2008…………………….. 113 1995-2008)…………………………………………………………….Table 5.5.5: Patient Survival 115 by Year of Transplant (Living Related Transplant, Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant,1995-2008)……………………………………………………………. 114 1995-2008)……………………………………………………………..115Table 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications 1995-2008)……………………………………………………………..114(in %) at year 2006……………………………………………………………Table 5.5.7: Patient Survival 116 by Year of Transplant (Commercial Cadaver Transplant, Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications1995-2008)……………………………………………………………. (in %) 115 at year 2007……………………………………………………………Table 5.5.8: Graft Survival 116 by Year of Transplant (Commercial Cadaver Transplant, Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications1995-2008)……………………………………………………………..115 (in %) at year 2008……………………………………………………………Table 5.6.1: Risk Factors 116 for IHD in Renal Transplant Recipients at Year 2006, 2007 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117and 2008………………………………………………………………. 116 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117Table 5.6.2(a): Systolic BP, 2006-2008…………………………………………….. 117 Figure 5.6.3: CKD stages by year……………………………………………………118Table 5.6.2(b): Diastolic BP, 2006-2008…………………………………………….117 Figure 5.6.4: BMI by year……………………………………………………………118Table 5.6.3: CKD stages, 2006-2008……………………………………………….. 118 Figure 5.6.5 (a): LDL, 2006-2008…………………………………………………..Table 5.6.4: BMI, 2006-2008………………………………………………………. 119 118 Figure 5.6.5(b): Total Cholesterol, 2006-2008………………………………………Table 5.6.5(a): LDL, 2006-2008……………………………………………………. 120 119 Figure 5.6.5(c): HDL by year………………………………………………………..Table 5.6.5(b): Total Cholesterol, 120 2006-2008………………………………………. 119 Figure 5.7.1: Cumulative distribution of QoL- Index score in TableTransplant 5.6.5(c): recipients, HDL, 2006-2008……………………………………………………. 120 1999-2008……………………………………………………………..Table 5.6.6(a): Treatment 122 for hypertension, 2006-2008……………………………..121 Figure 5.7.2: Cumulative distribution of QoL- Index score in Tablerelation 5.6.6(b): to Diabetes Distribution of Systolic BP without anti-hypertensives, 2006-2008..121 mellitus, Transplant recipients 1999 – 2008…………………………..Table 5.6.6(c): Distribution 122 of Diastolic BP without anti-hypertensives, 2006-2008.121 Figure 5.7.3: Cumulative distribution of QoL- Index score in Tablerelation 5.6.6(d): to Gender, Distribution of Systolic BP on anti-hypertensives, 2006-2008…….. 121 Transplant recipients 1999-2008……………………………………….123Table 5.6.6(e): Distribution of Diastolic BP on anti-hypertensives, 2006-2008……. 121 Figure 5.7.4: Cumulative distribution of QoL- Index score in Tablerelation 5.7.1: to Age, Cumulative distribution of QoL-Indexscore in Transplant recipients 1999- Transplant recipients 1999-2008………………………………………2008…………………………………………………………………….122 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relationTable 5.7.2: to Year Cumulative of entry, distribution of QoL-Index score in relation to Diabetes mellitus, Transplant recipients 1999-2008………………………………………Transplant 124 recipients 1999 – 2008……………………………………..122 Table 5.7.3: Cumulative distribution of QoL-Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Table 5.7.4: Cumulative distribution of QoL-Index score in relation to Age, Transplant recipients 1999-2008………………………………………………….. 123

101 100 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION

TableTable 5.7.5: 5.7.5: Cumulative Cumulative distribut distributionion of QoL-Indexof QoL-Index score score in relationin relation to Yearto Year of entry,of entry, TransplantTransplant recipients recipients 1999-2008…………………………………….…124 1999-2008…………………………………….…124

ListList of Figuresof Figures

FigureFigure 5.1.1: 5.1.1: Stock Stock and and Flow Flow of Renalof Renal Transplantation, Transplantation, 1975-2008…………………102 1975-2008…………………102 FigureFigure 5.1.2: 5.1.2: New New Transplant Transplant Rate, Rate, 1975-2008………………………………………103 1975-2008………………………………………103 FigureFigure 5.1.3: 5.1.3: Transplant Transplant Prevalence Prevalence Rate, Rate, 1975-2008………………………………..104 1975-2008………………………………..104 FigureFigure 5.4.2(a): 5.4.2(a): Transplant Transplant Recipient Recipient Death Death Rate, Rate, 1977-2008……………………….110 1977-2008……………………….110 FigureFigure 5.4.2(b): 5.4.2(b): Transplant Transplant Recipient Recipient Graft Graft Loss Loss Rate, Rate, 1977-2008………………….110 1977-2008………………….110 FigureFigure 5.5.1: 5.5.1: Patient Patient Survival, Survival, 1995-2008……………………………………………112 1995-2008……………………………………………112 FigureFigure 5.5.2: 5.5.2: Graft Graft Survival, Survival, 1995-2008……………………………………………...112 1995-2008……………………………………………...112 FigureFigure 5.5.3: 5.5.3: Patient Patient Survival Survival by byType Type of Transplant,of Transplant, 1995-2008………………….. 1995-2008………………….. .113 .113 FigureFigure 5.5.4: 5.5.4: Graft Graft Survival Survival by byType Type of Transplants,of Transplants, 1995-2008…………………….113 1995-2008…………………….113 FigureFigure 5.5.5: 5.5.5: Patient Patient Survival Survival by byYear Year of Trof ansplantTransplant (Living (Living Related Related Transplant, Transplant, 1995- 1995- 2008)…………………………………………………………………...2008)…………………………………………………………………... 114 114 FigureFigure 5.5.6: 5.5.6: Graft Graft Survival Survival by byYear Year of Tranof Transplantsplant (Living (Living Related Related Transplant, Transplant, 1995- 1995- 2008)…………………………………………………………………...2008)…………………………………………………………………... 114 114 FigureFigure 5.5.7: 5.5.7: Patient Patient Survival Survival by byYear Year of Trof ansplantTransplant (Commercial (Commercial Cadaver Cadaver Transplant, Transplant, 1995-2008)…………………………………………………………….1995-2008)……………………………………………………………. 115 115 FigureFigure 5.5.8: 5.5.8: Graft Graft Survival Survival by byYear Year of Tranof Transplantsplant (Commercial (Commercial Cadaver Cadaver Transplant, Transplant, 1995-2008)……………………………………………………………..1151995-2008)……………………………………………………………..115 FigureFigure 5.6.1(a): 5.6.1(a): Venn Venn Diagram Diagram for forPre Pre and and Po stPo Transplantst Transplant Complications Complications (in (in%) %) at year at year 2006…………………………………………………………… 2006…………………………………………………………… 116 116 FigureFigure 5.6.1(b): 5.6.1(b): Venn Venn Diagram Diagram for forPre Pre and and Po stPo Transplantst Transplant Complications Complications (in (in%) %) at year at year 2007…………………………………………………………… 2007…………………………………………………………… 116 116 FigureFigure 5.6.1 5.6.1 (c): (c): Venn Venn Diagram Diagram for forPre Pre and and Po stPo Transplantst Transplant Complications Complications (in (in%) %) at year at year 2008…………………………………………………………… 2008…………………………………………………………… 116 116 FigureFigure 5.6.2(a): 5.6.2(a): Systolic Systolic BP, BP, 2006-2008……………………………………………..117 2006-2008……………………………………………..117 FigureFigure 5.6.2(b): 5.6.2(b): Diastolic Diastolic BP, BP, 2006-2008……………………………………………117 2006-2008……………………………………………117 FigureFigure 5.6.3: 5.6.3: CKD CKD stages stages by byyear……………………………………………………118 year……………………………………………………118 FigureFigure 5.6.4: 5.6.4: BMI BMI by byyear……………………………………………………………118 year……………………………………………………………118 FigureFigure 5.6.5 5.6.5 (a): (a): LDL, LDL, 2006-2008………………………………………………….. 2006-2008………………………………………………….. 119 119 FigureFigure 5.6.5(b): 5.6.5(b): Total Total Cholesterol, Cholesterol, 2006-2008……………………………………… 2006-2008……………………………………… 120 120 FigureFigure 5.6.5(c): 5.6.5(c): HDL HDL by byyear……………………………………………………….. year……………………………………………………….. 120 120 FigureFigure 5.7.1: 5.7.1: Cumulative Cumulative distribu distributiontion of QoL-of QoL- Index Index score score in Transplantin Transplant recipients, recipients, 1999-2008……………………………………………………………..1999-2008…………………………………………………………….. 122 122 FigureFigure 5.7.2: 5.7.2: Cumulative Cumulative distribu distributiontion of QoL-of QoL- Index Index score score in relationin relation to Diabetesto Diabetes mellitus,mellitus, Transplant Transplant recipients recipients 1999 1999 – 2008………………………….. – 2008………………………….. 122 122 FigureFigure 5.7.3: 5.7.3: Cumulative Cumulative distri distributionbution of QoL-of QoL- Index Index scor score ine relationin relation to Gender,to Gender, TransplantTransplant recipients recipients 1999-2008……………………………………….123 1999-2008……………………………………….123 FigureFigure 5.7.4: 5.7.4: Cumulative Cumulative distri distributionbution of QoL-of QoL- Index Index scor score ine relationin relation to Age,to Age, TransplantTransplant recipients recipients 1999-2008……………………………………… 1999-2008……………………………………… 123 123 FigureFigure 5.7.5: 5.7.5: Cumulative Cumulative distribution distribution of QoL-Indeof QoL-Index scorex score in relationin relation to Yearto Year of entry,of entry, Transplant Transplant recipients recipients 1999-2008……………………………………… 1999-2008……………………………………… 124 124

101101 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationSECTION to Year 5.1: of STOCK entry, AND FLOW Transplant recipients 1999-2008…………………………………….…124 The number of new renal transplant patients shows an initial rise from 127 transplants per year in 1998 to a peak of 190 transplants in 2004. This is a rise of nearly 50% but List of Figures the number declined subsequently to only 100 in 2007 (Table 5.1.1). This is due to reduction in the number of transplantations done in China. As renal transplantation in Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102the country is still dependant on the availability of commercial cadaveric Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103transplantation done abroad this drop was foreseeable. There may be an increase post Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..1042008 Beijing Olympic Games and this is supported by 88 transplants in year 2008. Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110The number of functioning renal transplants reported to the National Transplant Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110Registry (NTR) had increased from 1178 in 1999 to 1730 in 2008 (Table 5.1.1). Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112Table 5.1.1: Stock and Flow of Renal Transplantation, 1999-2008 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008…………………..Year 1999 .113 2000 2001 2002 2003 2004 2005 2006 2007 2008 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113New transplant 127 143 163 172 160 190 162 141 100 88 patients Figure 5.5.5: Patient Survival by Year of Transplant (Living RelatedDied Transplant, 251995- 30 37 33 37 42 43 50 39 48 2008)…………………………………………………………………...Graft failure 37 114 32 40 39 42 44 21 38 37 32 Figure 5.5.6: Graft Survival by Year of Transplant (Living RelatedLost to FollowTransplant, up 1995- 1 9 3 5 4 14 10 10 18 10 2008)…………………………………………………………………...Functioning graft 1178 114 1250 1333 1428 1505 1595 1683 1726 1732 1730 Figure 5.5.7: Patient Survival by Year of Transplant (Commercialat 31st CadaverDecember Transplant, 1995-2008)…………………………………………………………….Figure 5.1.1: Stock and 115Flow of Renal Transplantation, 1975-2008 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 102 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION

TableThe 5.7.5: incidence Cumulative of renal distribut transplantationion of QoL-Index stabilised score at a inmodest relation rate to Yearof 5-7 of per entry, million populationTransplant (Table 5.1.2) recipients while 1999-2008…………………………………….…124transplant prevalence rate has grown slowly from 52 per million in 1999 to 64 per million population in 2007 (Table 5.1.3), an increase of 23% over the 1999 figures. However compared to growth in the prevalence rate of Listdialysis of Figures patients (which has increased by 300% from 205 in 1998 to 615 in 2007) our transplant prevalence rate has not kept up. In fact, the incidence rate and prevalence Figurerate 5.1.1:seem toStock reduce and in Flow year of 2008 Renal (3 Transplantation,and 62 per million 1975-2008…………………102 population respectively (Table Figure5.1.2 5.1.2: and 5.1.3). New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 FigureTable 5.4.2(a): 5.1.2: New Transplant Transplant Recipient Rate per Death million Rate, population 1977-2008……………………….110 (pmp), 1999-2008 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 FigureFigure 5.5.4: 5.1.2: Graft New Survival Transplant by Rate,Type 1975-2008 of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 FigureTable 5.6.3: 5.1.3: CKD Transplant stages Prevalence by year……………………………………………………118 Rate per million population (pmp), 1999-2008 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101103 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationFigure 5.1.3:to Year Transplant of entry, Prevalence Rate, 1975-2008 Transplant recipients 1999-2008…………………………………….…124

List of Figures

Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Table 5.1.4: Place of Transplantation, 1999-2008 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in Inrelation terms toof Gender, place of transplantation, transplantation within local centres has remained Transplant recipients 1999-2008……………………………………….123the quite same from 1999 to 2007, with 52 to 53 cases (51% of all renal transplants), Figure 5.7.4: Cumulative distribution of QoL- Index score in butrelation has decreased to Age, to 46 in 2008. This is disturbing data as it underscores our failure to Transplant recipients 1999-2008………………………………………improve transplantation 123 rates within the country which is mainly due to the lack of Figure 5.7.5: Cumulative distribution of QoL-Index score in relationboth living to Year as wellof entry, as cadaver donors. Transplantation in China in 2008 comprised Transplant recipients 1999-2008………………………………………47% of all of renal transplant 124 recipients with 41 patients.dfggfgdfgfdgfdgfdgfdgfdg

101 104 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION

TableSECTION 5.7.5: Cumulative 5.2: RECIPIENTS’ distribution CHARACTERISTICS of QoL-Index score in relation to Year of entry, In terms ofTransplant renal transplant recipients recipients’ 1999-2008…………………………………….…124 characteristics, age at transplant has been stable at 34 to 42 years. Between 58% and 70% of recipients were males over the last 10 years. There has been an increase in the proportion of diabetic patients undergoing Listtransplantation of Figures from 11% in 1998 to 21% in 2006 (Table 5.2.1). However, there is a drastic drop in number of diabetic patients who underwent transplantation in 2007 and Figure2008 5.1.1: (14% Stock and 15%and Flowrespectively) of Renal. Transplantation,This coincided with 1975-2008…………………102 the drop in China transplants Figurewhere 5.1.2: the New majority Transplant of the Rate, diabetic 1975-2008………………………………………103 patients underwent their transplantation. Patients Figurewith 5.1.3: hepatitis Transplant B and hepatitisPrevalence C remainedRate, 1975-2008………………………………..104 static at around 4-8%. In terms of cause of Figureend 5.4.2(a):stage renal Transplant failure (Table Recipient 5.2.2), Death the Rate, primary 1977-2008……………………….110 cause was still glomerulonephritis, Figurefollowed 5.4.2(b): by hypertensionTransplant R ecipient and diabetes Graft Loss as th eRate, third 1977-2008………………….110 cause. Up to 40% of transplant Figurerecipients 5.5.1: Patienthad end Survival, stage renal 1995-2008……………………………………………112 disease due to unknown causes, belying the fact that Figuremajority 5.5.2: of Graft these Survival, patients presented1995-2008……………………………………………...112 late. Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 FigureTable 5.5.4: 5.2.1: Graft Renal Survival Transplant by Recipients’Type of Transplants, Characteristics, 1995-2008…………………….113 1999-2008 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) Table 5.2.2: at Primaryyear 2006…………………………………………………………… Causes of End Stage Renal Failure, 1999-2008 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101105 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationSECTION to Year 5.3: of TRANSP entry, LANT PRACTICES Transplant recipients 1999-2008…………………………………….…124In 2006, 62% of the renal transplant recipients received their grafts from commercial sources. Fifty-eight percent of these were from commercial cadavers. Live donor transplantation made up 20% of transplants (28 recipients) in the same year which List of Figures was down from 45 cases (37%) in 1999 and 40 cases (24%) in 2005. Since 2006, the number of life donor has remained low - 31 in 2007 and 25 in 2008. Local cadaveric Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102donation made up 18% of transplants (24 recipients) in 2006 although it had shown an Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103initial promising rise to 37 recipients in 2001. 2007 marked the first time in 10 years Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104where there were more local transplantations (57%) compared to commercial Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110transplantations in oversea (41%). Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112Table 5.3.1: Type of Renal Transplantation, 1999-2008 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008……………………………………………………………Table 5.3.2: Biochemical 116 Data, 2006-2008 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 106 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION Table 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008…………………………………….…124

List of Figures

Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101107 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationTable 5.3.3: to Year Medication of entry, Data, 2006-2008 Transplant recipients 1999-2008…………………………………….…124

List of Figures

Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (CommercialIn 2008, Cadaver Cyclosporine Transplant, based regimes remained the mainstay of immunosuppressive 1995-2008)……………………………………………………………..115therapy with 69% of patients receiving it. This showed a gradual declining trend from Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications80% of all immunosuppression (in %) used since 2004 which coincided with increasing at year 2006……………………………………………………………trend in Tacrolimus usage. 116 Tacrolimus based regimes accounted for 24%. There has Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complicationsbeen continuous (in %) increase in the use of Mycophenolate Mofetil as the second at year 2007……………………………………………………………immunosuppressive agent 116 in 53% of patients in 2008 compared to 37% of patients in Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications2004. During the(in %)same period, the use of Azathioprine declined from 43% in 2004 to at year 2008……………………………………………………………28% in 2008. Monotherapy 116 of immunosuppresion is mostly not noted except in a Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117small number of patients. Sirolimus was used in 2% of all transplant recipients in Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………1172008. Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118In terms of non immunosuppressive medications, in year 2008 only 31% of patients Figure 5.6.5 (a): LDL, 2006-2008…………………………………………………..were on ACE inhibitors 119 or Angiotensin II receptor blockers (AIIRB) or both and this Figure 5.6.5(b): Total Cholesterol, 2006-2008………………………………………trend has been relatively 120 static since 2004. Calcium Channel blockers appeared to be Figure 5.6.5(c): HDL by year………………………………………………………..the mainstay of antihypertensive 120 therapy in 50% of patients whilst Beta Blockers use Figure 5.7.1: Cumulative distribution of QoL- Index score in wasTransplant reported recipients, in 45% of patients. Other antihypertensives were reported in 14% of 1999-2008……………………………………………………………..patients. The widespread 122 use of Calcium Channel blockers either as monotherapy or Figure 5.7.2: Cumulative distribution of QoL- Index score in combinationrelation to Diabetes may be due to the use of the dihydropyridine group to minimise the dose mellitus, Transplant recipients 1999 – 2008…………………………..of cyclosporine, which 122 remains the main immunosuppressive drug. Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 108 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION

TableSECTION 5.7.5: Cumulative 5.4: TRANSP distributLANTion OUTCOMESof QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008…………………………………….…124 5.4.1 Post-transplant Complications

ListIn of theFigures year 2008, sixty-two percent of patients were hypertensive prior to transplantation whereas 27% developed hypertension post transplantation. Fourteen Figurepercent 5.1.1: of Stock patients and hadFlow diabetes of Renal mellitus Transplantation, prior to 1975-2008…………………102 transplant whereas only 7% of Figurepatients 5.1.2: developed New Transplant post transplant Rate, 1975-2008………………………………………103 diabetes mellitus. These trends have been quite the Figuresame 5.1.3: since Transplant 2006. In Prevalence terms of cardiovascular Rate, 1975-2008………………………………..104 and cerebrovascular disease 4% had Figureeither 5.4.2(a): or both Transplant prior to transplant Recipient wher Deatheas Rate,5% developed 1977-2008……………………….110 these post transplantation. Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 FigureTable 5.5.1: 5.4.1: Patient Post-transplant Survival, Complications, 1995-2008……………………………………………112 2006-2008 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) 5.4.2 Deaths at year and 2007…………………………………………………………… Graft Loss 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) In 2008, 48 at yeartransplant 2008…………………………………………………………… recipients died and 32 lost their grafts. The rates of transplant 116 Figuredeath 5.6.2(a): and graft Systolic loss have BP, remained2006-2008……………………………………………..117 static for the past 10 years (Table 5.4.2). The main Figureknown 5.6.2(b): causes Diastolic of death BP, have 2006-2008……………………………………………117 been infection and cardiovascular disease with 26% and Figure13% 5.6.3: respectively. CKD stages Another by year……………………………………………………118 23% of patients died at home, which is usually presumed Figureto be 5.6.4: cardiovascular BMI by year……………………………………………………………118 death as well. Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 FigureCancer 5.6.5(b): death Totalrates Cholesterol,have been significantly 2006-2008……………………………………… high since 2003 contributing to 15% 120of all Figuredeaths 5.6.5(c): in 2003, HDL 17% by year……………………………………………………….. in 2004 and 19% in 2008. Death due to liver disease 120 has Figureremained 5.7.1: relatively Cumulative static distribu at 5-9%tion fromof QoL- 2003 Index to 2006. score in Transplant recipients, 1999-2008…………………………………………………………….. 122 FigureIn terms 5.7.2: of Cumulative graft loss, distribu72% weretion due of QoL-to rejection Index scorewith in6% relation apiece tofor Diabetes vascular causes and infectionsmellitus, in 2008 Transplant and these recipients figures 1999have –remained 2008………………………….. relatively stable for the 122last 4 Figureyears. 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101109 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationTable 5.4.2: to Year Transplant of entry, Patients Death Rate and Graft Loss, 1999-2008 Transplant recipients 1999-2008…………………………………….…124

List of Figures

Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008…………………..Figure 5.4.2(a): Transplant .113 Recipient Death Rate, 1977-2008 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant ComplicationsFigure 5.4.2(b): (in Transplant %) Recipient Graft Loss Rate, 1977-2008 at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 110 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION

TableTable 5.7.5: 5.4.3: Cumulative Causes of Deathdistribut in Transplantion of QoL-Index Recipients, score 1999-2008 in relation to Year of entry, Transplant recipients 1999-2008…………………………………….…124

List of Figures

Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, Table 5.4.4:1995-2008)……………………………………………………………..115 Causes of Graft Failure, 1999-2008 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101111 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relation5.5: PATIENT to Year of AND entry, GRAFT SURVIVAL Transplant recipients 1999-2008…………………………………….…124Overall patient survival ra tes from 1995 to 2008 have been 95%, 91%, 88% and 81% at year 1, 3, 5 and 10 respectively. Overall graft survival rate has been 91%, 85%, 80% and 66% at year 1, 3, 5 and 10 respectively. List of Figures Table 5.5.1: Patient Survival, 1995-2008 Figure 5.5.1: Patient Survival, 1995-2008 Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- Table 5.5.2: Graft Survival, 1995-2008 Figure 5.5.2: Graft Survival, 1995-2008 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 112 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION

TableOutcomes 5.7.5: Cumulative of renal transplantation distribution of from QoL-Index the 4 donor score ingroups relation are to s hownYear ofin entry,respect to patient andTransplant graft survival recipients in the 1999-2008…………………………………….…124 Kaplan Meier survival graphs in Figures 5.5.3 and 5.5.4 respectively. In terms of patient survival, live donor grafts maintained good survival rates with 96%, 95%, 94% and 89% at years 1, 3, 5 and 10 respectively. In Listterms of Figures of graft survival, commercial cadaver grafts performed similarly well with a survival of 94%, 89%, 82% and 70% at year 1, 3, 5 and 10 compared to 92%, 88%, Figure84% 5.1.1: and 68% Stock for and the Flow same of intervals Renal Transplantation, for live donor grafts. 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 FigureTable 5.1.3: 5.5.3: Transplant Patient Survival Prevalence by Type Rate, of Transplant, 1975-2008………………………………..104 1995-2008 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 FigureFigure 5.5.7: 5.5.3: Patient Patient Survival by by Type Year of Transplant,of Transplant Figure (Commercial 5.5.4: Graft Cadaver Survival byTransplant, Type of 1995-2008)……………………………………………………………. 1995-2008 Transplants, 1995-2008 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 FigureTable 5.6.5(b): 5.5.4: Graft Total Survival Cholesterol, by Type 2006-2008……………………………………… of Transplant, 1995-2008 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101113 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationPatient to and Year graft of entry, survival for living related transplants were compared for two Transplant recipients 1999-2008…………………………………….…124cohorts. The 1995-2000 cohort and the 2001-2008 cohort were compared for patient survival (Figures 5.5.5) but both were comparable and survival remained excellent for both groups. List of Figures Graft survival for living related transplants (Figure 5.5.6) however was much better in Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102patients in the 2001-2008 cohort even from the outset probably due to increased usage Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103of newer immunosuppressive agents. Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110Table 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995-2008) Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………...Figure 5.5.5: Patient Survival 114 by Year of Transplant Figure 5.5.6: Graft Survival by Year of Transplant Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver (Living Transplant, Related Transplant, 1995-2008) (Living Related Transplant, 1995-2008) 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118Table 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995-2008) Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 114 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION

TableIn terms5.7.5: ofCumulative commercial distribut cadavericion of transp QoL-Indexlantation, score the incomparison relation to betweenYear of entry,the 1995- 2000 cohortTransplant and 2001-2008 recipients cohort 1999-2008…………………………………….…124 was performed. Both patient and graft survival showed comparable results to living related transplants done within the country.

List of Figures Table 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995- Figure2008) 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant Figure 5.5.8: Graft Survival by Year of Transplant Figure 5.5.6: (Commercial Graft Survival Cadaver byTransplant, Year of 1995-2008) Transplant (Living (Commercial Related Transplant, Cadaver Transplant, 1995- 1995-2008) 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 FigureTable 5.6.3: 5.5.8: CKD Graft stages Survival by year……………………………………………………118by Year of Transplant (Commercial Cadaver Transplant, 1995- Figure2008) 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101115 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationSECTION to Year 5.6: of entry, CARDIOVAS CULAR RISK IN RENAL TRANSPLANT Transplant recipients 1999-2008…………………………………….…124RECIPIENTS

5.6.1 Risk Factors for Ischaemic Heart Disease List of Figures In 2008, 85.2% of patients were hypertensive, 23.2% were diabetic and 56.8% had Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102renal insufficiency fulfilling CKD III and above. Forty-five percent of patients had 2 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103cardiovascular risk factors while 10% had all 3 major risk factors. Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110Table 5.6.1: Risk Factors for IHD in Renal Transplant Recipients at Year 2006, 2007 and Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….1102008 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Figure 5.6.1(b): Venn Diagram for Pre and Post Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant ComplicationsTransplant (in Complications%) (in %) at year 2006 Transplant Complications (in %) at year 2007 at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008……………………………………………………………..Figure 5.6.1 (c): Venn Diagram 122 for Pre and Post Figure 5.7.2: Cumulative distribution of QoL- Index score in relationTransplant to Diabetes Complications (in %) at year 2008 mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 116 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION

Table5.6.2 5.7.5: Blood Cumulative Pressure distribut Classificationion of QoL-Index According score to JNCin relation VI Criteria, to Year of 2006, entry, 2007, and 2008 Transplant recipients 1999-2008…………………………………….…124

In 2008, 22% of renal transplant recipients had stage I hypertension whereas 5% had Liststage of Figures II hypertension and 0.7% had stage III hypertension despite being on treatment. In terms of diastolic hypertension 13% had stage I hypertension, 1.4% of patients had Figurestage 5.1.1: II diastolicStock and hypertensionFlow of Renal and Transplantation, 0.33% of patients1975-2008…………………102 had stage III diastolic Figurehypertension 5.1.2: New despite Transplant being Rate,on treatment. 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 FigureTable 5.4.2(a): 5.6.2(a): Transplant Systolic BP, Recipient 2006-2008 Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7:Figure Patient 5.6.2(a): Survival Systolic by BP, Year 2006-2008 of Transplant Figure(Commercial 5.6.2(b): CadaverDiastolic BP, Transplant, 2006-2008 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 FigureTable 5.6.5(b): 5.6.2(b): Total Diastolic Cholesterol, BP, 2006-2008 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101117 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationTable 5.6.3: to Year CKD of stages,entry, 2006-2008 Transplant recipients 1999-2008…………………………………….…124

List of Figures

Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Table 5.6.3 shows the CKD Figure 5.6.3: CKD stages by year Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Stage classification by year and Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 in 2008, 43.5% of renal Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 transplant recipients had CKD Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Stage III whilst another 7.2% Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 had CKD Stage IV. CKD Stage Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 V (impending renal Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- replacement therapy) was 2008)…………………………………………………………………... 114 found in 1.6% of renal Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- transplant recipients. 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115Table 5.6.4: BMI, 2006-2008 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118In terms of BMI for 2008, Figure 5.6.4: BMI by year Figure 5.6.4: BMI by year……………………………………………………………11855.5% of renal transplant Figure 5.6.5 (a): LDL, 2006-2008…………………………………………………..recipients had BMIs 119 of 25 or Figure 5.6.5(b): Total Cholesterol, 2006-2008………………………………………below. However 30.1% 120 were Figure 5.6.5(c): HDL by year………………………………………………………..overweight and another 120 14% Figure 5.7.1: Cumulative distribution of QoL- Index score in wereTransplant obese. recipients, There seems to be a 1999-2008……………………………………………………………..slow but steady increase 122 in Figure 5.7.2: Cumulative distribution of QoL- Index score in numbersrelation to of Diabetes obese patients over mellitus, Transplant recipients 1999 – 2008…………………………..the last few years. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 118 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION

TableTable 5.7.5: 5.6.5(a): Cumulative LDL, 2006-2008 distribut ion of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008…………………………………….…124

List of Figures

Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 FigureLDL 5.1.2: cholesterol New Transplant has Rate, been 1975-2008………………………………………103 Figure 5.6.5 (a): LDL, 2006-2008 Figureidentified 5.1.3: Transplant as the primary Prevalence lipid Rate, 1975-2008………………………………..104 Figuretarget 5.4.2(a): for prevention Transplant of Recipient coronary Death Rate, 1977-2008……………………….110 Figureheart 5.4.2(b): disease Transplantby NCEP withRecipient a log Graft Loss Rate, 1977-2008………………….110 Figurelinear 5.5.1: relationship Patient Survival, between 1995-2008……………………………………………112risk of FigureCHD 5.5.2: and Graft levelSurvival, of 1995-2008……………………………………………...112 LDL Figurecholesterol. 5.5.3: Patient In Survival terms of by renalType of Transplant, 1995-2008………………….. .113 Figuretransplant 5.5.4: Graft recipients Survival inby Type 2008 of Transplants, 1995-2008…………………….113 Figure35.6% 5.5.5: have Patient LDL Survivallevels below by Year 2.6 of Transplant (Living Related Transplant, 1995- mol/l and 2008)…………………………………………………………………...this shows an increasing 114 Figuretrend 5.5.6: from Graft 18.1%Survival inby Year 2004, of Transplant (Living Related Transplant, 1995- possibly 2008)…………………………………………………………………... due to the more 114 Figurewidespread 5.5.7: Patient and aggressive Survival by use Year of of Transplant (Commercial Cadaver Transplant, statins. Whether1995-2008)……………………………………………………………. or not this 115 Figuretranslates 5.5.8: Graft into lessSurvival cardiovascular by Year of Transplant (Commercial Cadaver Transplant, mortality 1995-2008)……………………………………………………………..115 in the transplant Figurepopulation 5.6.1(a): isVenn still Diagram questionable. for Pre and Post Transplant Complications (in %) Patients with at year serum 2006…………………………………………………………… LDL >3.4 also 116 Figuredemonstrated 5.6.1(b): Venn downward Diagram for trend Pre and Post Transplant Complications (in %) over the last at yearfew years.2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) In terms of at other year cholestero2008……………………………………………………………l parameters for 2008, 56% had total cholesterol levels 116 >= Figure5.2 and5.6.2(a): 6.2% Systolichad HDL BP, cholesterol 2006-2008……………………………………………..117 levels <1.0 . Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 FigureTable 5.6.3: 5.6.5(b): CKD Total stages Cholesterol, by year……………………………………………………118 2006-2008 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101119 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationFigure to5.6.5(b): Year of Total entry, Cholesterol, 2006-2008 Transplant recipients 1999-2008…………………………………….…124

List of Figures

Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112Table 5.6.5(c): HDL, 2006-2008 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (CommercialFigure Cadaver 5.6.5(c): Transplant, HDL by year 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 120 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION

TableEighty-six 5.7.5: Cumulative percent of distribut patientsion in of 2008 QoL-Index were on score antihypertensives in relation to Year and of the entry, majority were on moreTransplant than 1 recipientsantihypertensive 1999-2008…………………………………….…124 drug with 31% on 2 antihypertensives and 21% on 3 antihypertensives. Six percent of patients still had systolic BP of > 160 mmHg and 17% had diastolic BP of > 90 mmHg despite being given antihypertensive(s), Listhowever, of Figures this is an improvement from previous years.

FigureTable 5.1.1: 5.6.6(a): Stock Treatment and Flow for of hypertension, Renal Transplantation, 2006-2008 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 FigureTable 5.5.3: 5.6.6(b): Patient Distribution Survival ofby Systolic Type of BP Transplant, without anti-hypertensives, 1995-2008………………….. 2006-2008 .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, Table 5.6.6(c): Distribution of Diastolic BP without anti-hypertensives, 2006-2008 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) Table 5.6.6(d): at year Distribution 2007…………………………………………………………… of Systolic BP on anti-hypertensives, 2006-2008 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 FigureTable 5.6.5 5.6.6(e): (a): LDL, Distribution 2006-2008………………………………………………….. of Diastolic BP on anti-hypertensives, 2006-2008 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101121 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationSECTION to Year 5.7: of QOL entry, INDEX SCORE IN RENAL TRANSPLANT RECIPIENTS Transplant recipients 1999-2008…………………………………….…124 1179 patients who were transplanted between 1999-2008 were analysed for QoL index score. They reported median QoL index score of 10 (Table 5.7.1 and Figure List of Figures 5.7.1). It was interesting to note that for those who underwent renal transplantation between this period, diabetics and non-diabetics had the same median QoL index Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102score of 10 (Table 5.7.2 and Figure 5.7.2), and this is in contrast to HD and CAPD Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103patients where diabetics reported lower QoL index score than non-diabetics. There Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104was also no difference seen between gender (Table 5.7.3 and Figure 5.7.3) and age Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110(Table 5.7.4 and Figure 5.7.4). It is worthwhile to note that those above 60 years old Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110also enjoyed the same QoL index score (10) as their younger counterparts (Table Figure 5.5.1: Patient Survival, 1995-2008……………………………………………1125.7.4 and Figure 5.7.4). This trend of high QoL index score among renal transplant Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112patients was maintained over the last 10 years (Table 5.7.5 and Figure 5.7.5). Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113Table 5.7.1: Cumulative distribution of QoL- Figure 5.7.1: Cumulative distribution of QoL- Figure 5.5.5: Patient Survival by Year of Transplant (Living RelatedIndexscore Transplant, in Transplant 1995- recipients 1999 - 2008 Index score in Transplant recipients, 1999 - 2008 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117Table 5.7.2: Cumulative distribution of QoL- Figure 5.7.2: Cumulative distribution of QoL- Figure 5.6.3: CKD stages by year……………………………………………………118Index score in relation to Diabetes mellitus, Index score in relation to Diabetes mellitus, Figure 5.6.4: BMI by year……………………………………………………………118Transplant recipients 1999 - 2008 Transplant recipients 1999 – 2008 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 122 FifthFifthFifth Report Report Report of the of of the the NationalNNationalational Trans Trans Transplantplantplant Reg Re istrRegistrygyistr2008y 2008 2008 RENALRENAL TRANSPLANATION TRANSPLANATION Table 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008…………………………………….…124 Table 5.7.3: Cumulative distribution of QoL- Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant Index score in relation to Gender, Transplant Listrecipients of Figures 1999-2008 recipients 1999-2008

Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 FigureTable 5.5.8: 5.7.4: Graft Cumulative Survival by distribution Year of Tran of QoL-splant (CommercialFigure 5.7.4: CumulativeCadaver Transplant, distribution of QoL- Index score1995-2008)……………………………………………………………..115 in relation to Age, Transplant Index score in relation to Age, Transplant Figurerecipients 5.6.1(a): 1999-2008 Venn Diagram for Pre and Post Transplant recipients Complications 1999-2008 (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101123 Fifth Report of the FifthFifth Report Report of of the the National Transplant Registry 2008 RENALRENAL TRANSPLANATIONTRANSPLANATION NationalNational Transplant Transplant Registry Registry 2008 2008

Table 5.7.5: Cumulative distribution of QoL-Index score in relationTable 5.7.5:to Year Cumulative of entry, distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008…………………………………….…124Transplant recipients 1999-2008

List of Figures

Figure 5.1.1: Stock and Flow of Renal Transplantation, 1975-2008…………………102 Figure 5.1.2: New Transplant Rate, 1975-2008………………………………………103 Figure 5.1.3: Transplant Prevalence Rate, 1975-2008………………………………..104 Figure 5.4.2(a): Transplant Recipient Death Rate, 1977-2008……………………….110 Figure 5.4.2(b): Transplant Recipient Graft Loss Rate, 1977-2008………………….110 Figure 5.5.1: Patient Survival, 1995-2008……………………………………………112 Figure 5.5.2: Graft Survival, 1995-2008……………………………………………...112 Figure 5.5.3: Patient Survival by Type of Transplant, 1995-2008………………….. .113 Figure 5.5.4: Graft Survival by Type of Transplants, 1995-2008…………………….113 Figure 5.5.5: Patient Survival by Year of Transplant (Living RelatedFigure 5.7.5:Transplant, Cumulative 1995- distribution of QoL-Index score in relation to Year of entry, 2008)…………………………………………………………………...Transplant recipients 1999-2008 114 Figure 5.5.6: Graft Survival by Year of Transplant (Living Related Transplant, 1995- 2008)…………………………………………………………………... 114 Figure 5.5.7: Patient Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………. 115 Figure 5.5.8: Graft Survival by Year of Transplant (Commercial Cadaver Transplant, 1995-2008)……………………………………………………………..115 Figure 5.6.1(a): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2006…………………………………………………………… 116 Figure 5.6.1(b): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2007…………………………………………………………… 116 Figure 5.6.1 (c): Venn Diagram for Pre and Post Transplant Complications (in %) at year 2008…………………………………………………………… 116 Figure 5.6.2(a): Systolic BP, 2006-2008……………………………………………..117 Figure 5.6.2(b): Diastolic BP, 2006-2008……………………………………………117 Figure 5.6.3: CKD stages by year……………………………………………………118 Figure 5.6.4: BMI by year……………………………………………………………118 Figure 5.6.5 (a): LDL, 2006-2008………………………………………………….. 119 Figure 5.6.5(b): Total Cholesterol, 2006-2008……………………………………… 120 Figure 5.6.5(c): HDL by year……………………………………………………….. 120 Figure 5.7.1: Cumulative distribution of QoL- Index score in Transplant recipients, 1999-2008…………………………………………………………….. 122 Figure 5.7.2: Cumulative distribution of QoL- Index score in relation to Diabetes mellitus, Transplant recipients 1999 – 2008………………………….. 122 Figure 5.7.3: Cumulative distribution of QoL- Index score in relation to Gender, Transplant recipients 1999-2008……………………………………….123 Figure 5.7.4: Cumulative distribution of QoL- Index score in relation to Age, Transplant recipients 1999-2008……………………………………… 123 Figure 5.7.5: Cumulative distribution of QoL-Index score in relation to Year of entry, Transplant recipients 1999-2008……………………………………… 124

101 124 CHAPTER 6

HOMOGRAFT - HEART VALVE TRANSPLANTATION

Editor: Mr. Mohamed Ezani Hj Md Taib

Expert Panel: Mr Mohamed Ezani Md. Taib (Chairperson) Dr Abdul Rais Sanusi Datuk Dr Aizai Azan Abdul Rahim Dr Ashari Yunus Dato’ Dr David Chew Soon Ping

Contents

6.0 Introduction

6.1 Stock and Flow

6.2 Recipients’ Characteristics x Demographics

6.3 Transplant Practices x Donor Details x Type of Transplant

6.4 Transplant Outcomes x Patient Survival HOMOGRAFTHOMOGRAFT -- HEARTHEART VALVEVALVE FifthFifthFifth ReportReport of ofof the thethe TRANSPLANTATIONTRANSPLANTATION National NationalNational Transplant TransplantTransplant Registry Registry 2008 20082008 ListList ofof TablesTables TableTable 6.1.1:6.1.1: StockStock andand Flow,Flow, 1996-20081996-2008...... 128 128 TableTable 6.2.1:6.2.1: DistributionDistribution ofof PatientsPatients byby Gender,Gender, 1996-20081996-2008...... 129 129 TableTable 6.2.2:6.2.2: DistributionDistribution ofof PatientsPatients byby EthnicEthnic Group,Group, 1996-20081996-2008...... 130 130 TableTable 6.2.3:6.2.3: DistributionDistribution ofof PatientsPatients byby Age,Age, 1996-20081996-2008...... 131 131 TableTable 6.3.1:6.3.1: NumberNumber ofof ValvesValves HarvHarvestedested byby TypeType ofof Homograft,Homograft, 1996-20081996-2008...... 132 132 TableTable 6.3.2:6.3.2: TypeType ofof Transplant,Transplant, 1996-20081996-2008...... 132 132 TableTable 6.4.1:6.4.1: PatientPatient SurvSurvivalival byby Gender,Gender, 1996-20081996-2008...... 133 133 TableTable 6.4.2:6.4.2: PatientPatient SurvSurvivalival byby AgeAge Group,Group, 1996-20081996-2008...... 134 134 TableTable 6.4.3:6.4.3: PatientPatient SurvivalSurvival byby TypeType ofof Homograft,Homograft, 1996-20081996-2008...... 135 135

ListList ofof FiguresFigures FigureFigure 6.1.1:6.1.1: StockStock andand Flow,Flow, 1996-20081996-2008...... 128 128 FigureFigure 6.2.1:6.2.1: DistributionDistribution ofof PatientsPatients byby Gender,Gender, 1996-20081996-2008...... 129 129 FigureFigure 6.2.2:6.2.2: DistributionDistribution ofof PatientsPatients byby EthnicEthnic Group,Group, 1996-20081996-2008...... 130 130 FigureFigure 6.2.3:6.2.3: DistributionDistribution ofof PatientsPatients byby Age,Age, 1996-20081996-2008...... 131 131 FigureFigure 6.3.2:6.3.2: TypeType ofof Transplant,Transplant, 1996-20081996-2008...... 132 132 FigureFigure 6.4.1:6.4.1: PatientPatient SurvivalSurvival byby Gender,Gender, 1996-20081996-2008...... 133 133 FigureFigure 6.4.2:6.4.2: PatientPatient SurvivalSurvival byby AgeAge Group,Group, 1996-20081996-2008...... 134 134 FigureFigure 6.4.3:6.4.3: PatientPatient SurvivalSurvival byby TypeType ofof Homograft,Homograft, 1996-20081996-2008...... 135 135

126126

ValvularValvular homograftshomografts areare usedused routinelyroutinely inin cardiaccardiac surgerysurgery especiallyespecially forfor patientspatients withwith congenitalcongenital valvular valvular heart heart disease. disease. They They are are us useded as as biological biological conduits conduits to to repla replacece absent absent valvesvalves or or to to reconstruct reconstruct outflow outflow tracks tracks in in the the heart. heart. Homografts Homografts are are superior superior to to artificial artificial valvesvalves due due to to their their inherent inherent traits traits such such as as superior superior perfusion perfusion parameters, parameters, durability, durability, ease ease ofof handling handling and and reduced reduced risk risk of of thrombo- thrombo-embolicembolic phenomenon. phenomenon. This This removes removes the the need need forfor tight tight anticoagulation anticoagulation treatment treatment post post ope operativelyratively and and is is extr extremelyemely convenient convenient for for childrenchildren and and women women of of childbearing childbearing age age in in w whomhom anticoagulationanticoagulation isis contraindicated.contraindicated. HomograftsHomografts havehave inherentinherent resistanceresistance toto ininfectionfection andand areare preferredpreferred inin anan environmentenvironment wherewhere sepsis sepsis is is of of concern. concern.

InstitutInstitut JantungJantung NegaraNegara (IJN)(IJN) establishedestablished thethe cardiovascularcardiovascular tissuetissue bankbank inin 1995.1995. ThisThis waswas in in response response to to the the rising rising need need for for homogr homograftsafts and and also also the the rising rising cost cost of of importing importing homograftshomografts from from overseas. overseas.

TheThe HomograftHomograft UnitUnit inin IJNIJN comprisescomprises ofof susurgeonsrgeons and and medical medical technicians technicians who who are are involvedinvolved inin retrieving,retrieving, processingprocessing andand cryoprescryopreservingerving thethe homograftshomografts forfor storage.storage. TheThe detaileddetailed records records of of the the size size of of the the homogr homograftsafts are are documented. documented. The The infective infective state state and and thethe serology serology status status of of th thee donors donors are are also also documented. documented.

TheThe outcome outcome of of patients patients that that had had been been implanted implanted with with homografts homografts has has been been encouragingencouraging and and these these patients patients have have been been having having good good qua qualitylity of of life. life.

TheThe continued continued efforts efforts by by the the Ministry Ministry of of H Healthealth in in promoting promoting organ organ and and tissue tissue donation donation havehave helped helped to to improve improve the the availability availability of of homografts homografts in in the the country. country. The The efficient efficient and and betterbetter streamlining streamlining of of organisation organisation structur structuree has has improved improved networking networking between between various various hospitalshospitals and and transplant transplant un unitsits with with better better public public and and medical medical staff staff awareness. awareness.

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HOMOGRAFTHOMOGRAFT -- HEARTHEART VALVEVALVE FifthFifthFifth ReportReport of ofof the thethe TRANSPLANTATIONTRANSPLANTATION National NationalNational Transplant TransplantTransplant Registry Registry 2008 20082008 List6.1 STOCK of Tables AND FLOW Table 6.1.1: Stock and Flow, 1996-2008 ...... 128 TableTable 6.2.1:6.1.1: DistributionStock and Flow, of Patients 1996-2008 by Gender, 1996-2008 ...... 129 TableYear 6.2.2: Distribution1996 1997 of Patients1998 1999 by 2000Ethnic2001 Group,2002 1996-20082003 2004 ...... 2005 2006 2007 2008 130 TableNew transplant6.2.3: Distribution 4 32 of Patients22 17 by Age,13 1996-200820 22 ...... 21 9 3 4 5 28 131 TableDeaths* 6.3.1: Number1 of Valves0 4 Harv3ested 0 by Type6 of4 Homograft,3 4 1996-20082 1 ...... 0 1323 Lost to follow up 0 0 0 0 0 0 0 0 0 0 0 0 0 TableAlive 6.3.2:with Type of Transplant, 1996-2008 ...... 132 Tablefunctioning 6.4.1: graft Patient 3Surv 35ival by53 Gender,67 801996-2008 94 112...... 130 135 136 139 144 168 133 Tableat 31 st6.4.2: December Patient Survival by Age Group, 1996-2008...... 134 Table*based 6.4.3: on year Patient of death Survival by Type of Homograft, 1996-2008 ...... 135

List of Figures FigureFigure 6.1.1:6.1.1: StockStock andand Flow,Flow, 1996-20081996-2008...... 128 Figure 6.2.1: Distribution New patients of Patients by Gender, 1996-2008 Alive at ...... 31st Dec 129 Figure 6.2.2:180 Distribution of Patients by Ethnic Group, 1996-2008...... 130 Figure 6.2.3:170 Distribution of Patients by Age, 1996-2008...... 131 Figure 6.3.2:160 Type of Transplant, 1996-2008 ...... 132 Figure 6.4.1:150 Patient Survival by Gender, 1996-2008 ...... 133 Figure 6.4.2:140 Patient Survival by Age Group, 1996-2008 ...... 134 Figure 6.4.3:130 Patient Survival by Type of Homograft, 1996-2008 ...... 135 120

110 100 90 80 70 umber of patients

N 60 50 40 30 20 10

0 1996 1998 2000 2002 2004 2006 2008 1997 1999 2001 2003 2005 2007

Year

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TableValvular 6.2.1: homografts Distribution are of used Patients routinely by Gender, in cardiac 1996-2008 surgery especially for patients with Yearcongenital 1996 valvular 1997 1998 heart 1999 disease. 2000 They2001 are2002 used2003 as biological2004 2005 conduits2006 2007 to repla2008 ceTOTAL absent Gendervalves orNo. to reconstructNo. No. outflowNo. No. tracks No. in No.the heart.No. HomograftsNo. No. No.are superiorNo. No. to artificialNo. Malevalves due2 to their19 inherent9 9 traits10 such6 as superior9 14 perfusion3 0 parameters,4 2 durability,13 100 ease Femaleof handling 2 and13 reduced13 risk8 of3 thrombo-14 embolic13 7 phenomenon.6 3 0This removes3 15 the100 need TOTALfor tight 4 anticoagulation 32 22 17 treatment 13 20 post ope22 ratively21 9 and is3 extr4emely 5 convenient28 200 for children and women of childbearing age in whom anticoagulation is contraindicated. Homografts have inherent resistance to infection and are preferred in an environment Figurewhere 6.2.1:sepsis Distribution is of concern. of Patients by Gender, 1996-2008 Male Female Institut 20Jantung Negara (IJN) established the cardiovascular tissue bank in 1995. This was in response to the rising need for homografts and also the rising cost of importing homografts18 from overseas. 16 The Homograft Unit in IJN comprises of surgeons and medical technicians who are involved14 in retrieving, processing and cryopreserving the homografts for storage. The detailed records of the size of the homografts are documented. The infective state and the serology12 status of the donors are also documented. 10 umber

TheN outcome of patients that had been implanted with homografts has been encouraging8 and these patients have been having good quality of life.

The continued6 efforts by the Ministry of Health in promoting organ and tissue donation have helped4 to improve the availability of homografts in the country. The efficient and better streamlining of organisation structure has improved networking between various hospitals 2and transplant units with better public and medical staff awareness.

0 1996 1998 2000 2002 2004 2006 2008 1997 1999 2001 2003 2005 2007 Year

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HOMOGRAFTHOMOGRAFT -- HEARTHEART VALVEVALVE FifthFifthFifth ReportReport of ofof the thethe TRANSPLANTATIONTRANSPLANTATION National NationalNational Transplant TransplantTransplant Registry Registry 2008 20082008 ListTable of 6.2.2: Tables Distribution of Patients by Ethnic Group, 1996-2008 TableYear 6.1.1: Stock1996 1997 and Flow,1998 1999 1996-2008 2000 2001...... 2002 2003 2004 2005 2006 2007 2008 TOTAL 128 Ethnic Table 6.2.1: DistributionNo. No. No. of PatientsNo. No. by No.Gender,No. 1996-2008No. No...... No. No. No. No. No. 129 Tablegroup 6.2.2: Distribution of Patients by Ethnic Group, 1996-2008 ...... 130 TableMalay 6.2.3: Distribution1 19 15 of Patients9 9 by Age,10 1996-200816 12 6...... 3 2 3 18 123 131 Chinese 3 11 4 3 2 9 4 6 1 0 1 0 7 51 Table 6.3.1: Number of Valves Harvested by Type of Homograft, 1996-2008 ...... 132 Indian 0 2 2 2 0 1 2 2 1 0 1 0 1 14 Table 6.3.2: Type of Transplant, 1996-2008 ...... 132 Others 0 0 1 3 2 0 0 1 1 0 0 2 2 12 TableTOTAL 6.4.1: Patient4 32 Surv 22ival by17 Gender,13 20 1996-2008 22 21...... 9 3 4 5 28 200 133 Table 6.4.2: Patient Survival by Age Group, 1996-2008...... 134 Table 6.4.3: Patient Survival by Type of Homograft, 1996-2008 ...... 135 Figure 6.2.2: Distribution of Patients by Ethnic Group, 1996-2008 List of Figures Malay Chinese Figure 6.1.1: Stock Indian and Flow, 1996-2008...... Others 128 Figure 6.2.1:20 Distribution of Patients by Gender, 1996-2008...... 129 Figure 6.2.2: Distribution of Patients by Ethnic Group, 1996-2008...... 130 Figure 6.2.3:18 Distribution of Patients by Age, 1996-2008...... 131 Figure 6.3.2:16 Type of Transplant, 1996-2008 ...... 132 Figure 6.4.1: Patient Survival by Gender, 1996-2008 ...... 133 Figure 6.4.2:14 Patient Survival by Age Group, 1996-2008 ...... 134 Figurer 6.4.3: Patient Survival by Type of Homograft, 1996-2008 ...... 135 12

umbe 10

N 8

4 2

0 1996 1998 2000 2002 2004 2006 2008 1997 1999 2001 2003 2005 2007 Year

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FifthFifthFifth ReportReport Report of of the the HOMOGRAFT HOMOGRAFT - -HEART HEART VALVE VALVE NationalNationalNational TransplantTransplant Transplant Registry RegistryRegistry 2008 2008 2008 TRANSPLANTATIONTRANSPLANTATION Table6.0 6.2.3: INTRODUCTION Distribution of Patients by Age, 1996-2008 Year 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 TOTAL AgeValvular No. homografts No. No. are usedNo. No.routinelyNo. inNo. cardiacNo. surgeryNo. No. especiallyNo. No. for No.patients No. with groupcongenital valvular heart disease. They are used as biological conduits to replace absent 0-9 2 15 15 12 10 14 10 11 3 1 3 2 19 117 10-19valves or1 to reconstruct13 5 outflow5 2tracks 2 in the10 heart.8 Homografts4 0 1 are superior2 7 to artificial60 20-39valves due1 to their4 inherent1 0traits 0 such3 as superior2 1 perfusion1 2 parameters,0 0 durability,2 17 ease 40-59of handling 0 and0 reduced0 risk0 of 0thrombo- 1 embolic0 1 phenomenon.1 0 0 This1 removes0 the 4need for60 tight 0 anticoagulation0 1 treatment0 1 post0 ope0 ratively0 0 and 0 is extr0 emely0 convenient0 2 for TOTALchildren 4 and women32 22 of childbearing17 13 20 age in22 whom21 anticoagulation9 3 4 5is contraindicated.28 200 MeanHomografts 12 have11 inherent11 7resistance 12 11to infection10 12 and15 are15 preferred 6 16 in an environment7 11 SDwhere sepsis7 is7 of concern.15 4 17 14 6 11 11 8 5 18 6 10 Median 11 10 8 7 8 5 10 9 10 20 5 11 7 8 Min 3 3 5 4 1 1 5 1 2 3 2 5 6 1 Institut Jantungmonths Negaramonths (IJN) establishedmonths the cardiovascular tissuemonths bank months in 1995. months This Maxwas in response21 30 to the70 rising17 need67 for53 homogr 28 afts53 and42 also20 the12 rising 47 cost 21of importing70 *homografts Age=date offrom implantation overseas. – date of birth

The Homograft Unit in IJN comprises of surgeons and medical technicians who are Figureinvolved 6.2.3: in retrieving,Distribution processing of Patients and by cryopresAge, 1996-2008erving the homografts for storage. The detailed records 0-9of yearsthe size of the homogr 10-19afts are years documented. The 20-39infective years state and the serology status 40-59 of yearsthe donors are also documented. 60 years 20 The outcome of patients that had been implanted with homografts has been encouraging18 and these patients have been having good quality of life. 16 The continued efforts by the Ministry of Health in promoting organ and tissue donation have helped14 to improve the availability of homografts in the country. The efficient and better streamlining of organisation structure has improved networking between various hospitalsr 12 and transplant units with better public and medical staff awareness. 10 Numbe

0 1996 1998 2000 2002 2004 2006 2008 1997 1999 2001 2003 2005 2007 Year

131127

HOMOGRAFTHOMOGRAFT -- HEARTHEART VALVEVALVE FifthFifthFifth ReportReport of ofof the thethe TRANSPLANTATIONTRANSPLANTATION National NationalNational Transplant TransplantTransplant Registry Registry 2008 20082008 List6.3 TRANSPLANT of Tables PRACTICES Table 6.1.1: Stock and Flow, 1996-2008 ...... 128 Table6.3.1 Donor6.2.1: DistributionDetails of Patients by Gender, 1996-2008 ...... 129 Table 6.2.2: Distribution of Patients by Ethnic Group, 1996-2008 ...... 130 TableTable 6.2.3:6.3.1: DistributionNumber of Valves of Patients Harves by tedAge, by 1996-2008 Type of Homograft,...... 1996-2008 131 TableYear 6.3.1: 1996Number 1997 of 1998 Valves 1999 Harv 2000ested2001 by2002 Type2003 of Homograft,2004 2005 2006 1996-20082007 2008...... TOTAL 132 Type of Table 6.3.2: TypeNo. No.of Transplant,No. No. 1996-2008No. No. No...... No. No. No. No. No. No. No. 132 Tablehomograft 6.4.1: Patient Survival by Gender, 1996-2008...... 133 Aortic 8 17 10 8 11 14 10 8 7 5 14 9 15 136 TablePulmonary 6.4.2: Patient1 14 Surv 11ival 10by Age12 Group,12 141996-2008 9 ...... 8 5 15 8 13 132 134 TableTOTAL 6.4.3: Patient9 31 Survival 21 18by Type23 of26 Homograft, 24 17 1996-200815 10 ...... 29 17 28 268 135

List of Figures Figure6.3.2 Transplant 6.1.1: Stock Details and Flow, 1996-2008...... 128 Figure 6.2.1: Distribution of Patients by Gender, 1996-2008...... 129 FigureTable 6.3.2:6.2.2: TypeDistribution of Transplant, of Patients 1996-2008 by Ethnic Group, 1996-2008...... 130 FigureYear 6.2.3:1996 Distribution 1997 1998 of1999 Patients 2000 by2001 Age,2002 1996-20082003 2004...... 2005 2006 2007 2008 TOTAL 131 FigureType of 6.3.2: Type of Transplant, 1996-2008 ...... 132 No. No. No. No. No. No. No. No. No. No. No. No. No. No. Figuretransplant 6.4.1: Patient Survival by Gender, 1996-2008 ...... 133 FigureAortic 6.4.2:4 Patient 19 Survival11 7 by Age7 Group,9 10 1996-2008 10 4 ...... 1 1 2 8 93 134 FigurePulmonary 6.4.3: 0 Patient 13 Survival11 10 by Type6 11of Homograft,12 11 1996-20085 2 ...... 3 3 20 107 135 TOTAL 4 32 22 17 13 20 22 21 9 3 4 5 28 200

Figure 6.3.2: Type of Transplant, 1996-2008

Aortic Pulmonary

22 20

18 16

14 r

umbe

N 10

8 6

4 2

0 1996 1998 2000 2002 2004 2006 2008 1997 1999 2001 2003 2005 2007 Year

126132

TableValvular 6.4.1: homografts Patient Surviv are usedal by routinelyGender, 1996-2008 in cardiac surgery especially for patients with Gendercongenital valvular heart disease.Male They are used as biological conduitsFemale to replace absent Intervalvalves (years)or to reconstruct % Survival outflow tracksSE in the heart. %Homografts Survival are superiorSE to artificial valves1 due to their inherent92 traits such as3 superior perfusion89 parameters, durability,3 ease 3 89 3 86 4 of handling5 and reduced87 risk of thrombo-4 embolic phenomenon.86 This removes4 the need SE=standardfor tight anticoagulation error treatment post operatively and is extremely convenient for children and women of childbearing age in whom anticoagulation is contraindicated. Homografts have inherent resistance to infection and are preferred in an environment Figurewhere 6.4.1:sepsis Patient is of concern. Survival by Gender, 1996-2008

Institut1.00 Jantung Negara (IJN) established the cardiovascular tissue bank in 1995. This was in response to the rising need for homografts and also the rising cost of importing homografts from overseas.

The0.75 Homograft Unit in IJN comprises of surgeons and medical technicians who are involved in retrieving, processing and cryopreserving the homografts for storage. The detailed records of the size of the homografts are documented. The infective state and the serology status of the donors are also documented. 0.50 The outcome of patients that had been implanted with homografts has been encouraging and these patients have been having good quality of life. Cumulative survival Cumulative 0.25 The continued efforts by the Ministry of Health in promoting organ and tissue donation have helped to improve the availability of homografts in the country. The efficient and better streamlining of organisation structure has improved networking between various hospitals0.00 and transplant units with better public and medical staff awareness. 0 1 2 3 4 5 Duration in years

Female Male

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HOMOGRAFTHOMOGRAFT -- HEARTHEART VALVEVALVE FifthFifthFifth ReportReport of ofof thethe the TRANSPLANTATIONTRANSPLANTATION National NationalNational Transplant TransplantTransplant RegistryRegistry 2008 20082008 ListTable of 6.4.2: Tables Patient Survival by Age Group, 1996-2008 TableAge group 6.1.1: Stock and Flow,0-9 1996-2008 years ...... 10-19 years 20 years 128 TableInterval 6.2.1: (months) Distribution % ofSurvival Patients bySE Gender, % 1996-2008 Survival ...... SE % Survival SE 129 Table 6.2.2:1 Distribution of88 Patients by 3Ethnic Group,97 1996-20082 ...... 85 1308 3 87 3 91 4 80 9 Table 6.2.3:5 Distribution of87 Patients by 3Age, 1996-200889 ...... 4 74 13110 TableSE=standard 6.3.1: Number error of Valves Harvested by Type of Homograft, 1996-2008 ...... 132 Table 6.3.2: Type of Transplant, 1996-2008 ...... 132 Table 6.4.1: Patient Survival by Gender, 1996-2008...... 133 TableFigure 6.4.2: 6.4.2: Patient Patient Surv Survivalival by by Age Age Group, Group, 1996-2008 1996-2008...... 134 Table 6.4.3: Patient Survival by Type of Homograft, 1996-2008 ...... 135 1.00 List of Figures Figure 6.1.1: Stock and Flow, 1996-2008...... 128 Figure 6.2.1: Distribution of Patients by Gender, 1996-2008...... 129 Figure0.75 6.2.2: Distribution of Patients by Ethnic Group, 1996-2008...... 130 Figure 6.2.3: Distribution of Patients by Age, 1996-2008...... 131 Figure 6.3.2: Type of Transplant, 1996-2008 ...... 132 Figure0.50 6.4.1: Patient Survival by Gender, 1996-2008 ...... 133 Figure 6.4.2: Patient Survival by Age Group, 1996-2008 ...... 134 Figure 6.4.3: Patient Survival by Type of Homograft, 1996-2008 ...... 135

survival Cumulative 0.25

0.00 0 1 2 3 4 5 Duration in years 0-9 years 10-19 years 20 years

126134

Institut Jantung Negara (IJN) established the cardiovascular tissue bank in 1995. This was in response to the rising need for homografts and also the rising cost of importing homografts0.75 from overseas.

The Homograft Unit in IJN comprises of surgeons and medical technicians who are involved in retrieving, processing and cryopreserving the homografts for storage. The detailed0.50 records of the size of the homografts are documented. The infective state and the serology status of the donors are also documented.

Thesurvival Cumulative 0.25 outcome of patients that had been implanted with homografts has been encouraging and these patients have been having good quality of life.

The continued efforts by the Ministry of Health in promoting organ and tissue donation have0.00 helped to improve the availability of homografts in the country. The efficient and better streamlining0 of organisation1 structur2 e has improved3 networking4 between5 various hospitals and transplant units with betterDuration public in years and medical staff awareness. Aortic Pulmonary

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CHAPTER 7

BONE AND TISSUE TRANSPLANTATION

Editor: Assoc Prof Dr Suzina Sheikh Ab Hamid

Expert Panel: Assoc Prof Dr Suzina Sheikh Ab Hamid (Chairperson) Dr Abdul Malik Mohamed Hussein Assoc Prof Dr Ahmad Hafiz Zulkifly Dr Thiageswari Umapathy Dr Ewe Teong Wan Assoc Prof Dr Vivek Ajit Singh Dr Norimah Yusof

Contents

7.0 Introduction

7.1 Stock of Tissue Allografts and Hospitals Where Tissues are Utilised from 2004 to 2008

7.2 Reporting Centres

7.3 Recipient Details

7.4 Pre Transplant Data

7.5 Transplant Surgery Data FifthFifthFifth ReportReport Report of ofof the thethe National Transplant Registry 2008 BONE BONE ANDAND TISSUETISSUE TRANSPLANTATIONTRANSPLANTATION NationalNational TransplantTransplant RegistryRegistry 20082008 7.1 STOCK OF TISSUE ALLOGRAFTS AND HOSPITALS WHERE TISSUES ListARE of UTILISED Tables FROM 2004 TO 2008 Table 7.1.1: Types of Tissue Allografts Supplied by USM Tissue Bank, 2004-2008 . 139 TableIn 2008 7.1.2: and Hospitals/Otherin the previous Sectorsyears, the Us maining Bone, tissue Tendon allografts and that Skin were Allografts distributed Provided were amniotic membranesby USM Tissue and deep-frozen Bank, 2004-2008 femoral ...... heads (Table 7.1.1). USM Tissue Bank 140 Tableprovided 7.1.3: tissue Hospitals/Other allografts to theSect Ministryors Using of Amniotic Health hospita Membranesls, private provided hospitals by USMand other sectors (TableTissue 7.1.2 Bank, and 7.1.3). 2004-2008 ...... 141 Table 7.2.1: Distribution of Reporting Centre, 2004-2008 ...... 142 TableTable 7.3.1:7.1.1 TypesDistribution of Tissue of Number Allograf ofts TransplantSupplied by by USM Gender, Tissue 2004-2008 Bank, 2004-2008 ...... 143 Table 7.3.2: Distribution of Number of Transplant by EthnicNo. of Group,pieces 2004-2008 ...... 143 Types of Tissue Allograft Table 7.3.3: Distribution of Number2004 of Transplant 2005 by 2006 Age Group, 2007 2004-2008 2008 ...... Total 143 TableDeep Frozen 7.3.4: BoneDistribution of Number of Transplant by Diagnosis Warranting Tissue Knee Slices Graft, 2004-2008 ...... 1 0 0 0 0 1 144 TableFemur 7.4.1: Distribution of Number9 of Transplantation 7 5 according 2 to Tissue 7 Provider,30 Femoral Head2004-2008 ...... 50 88 75 65 54 332 145 TableHumerus 7.4.2: Distribution of Number1 of Transplantation 3 0 by Origin 2 of Tissue 2 Graft, 8 Tibia 2004-2008 ...... 6 1 4 4 8 23 145 TableRadius 7.4.3: Distribution of Number1 of Transplantation 2 1 by Tissue 0 Graft Types, 3 2004-7 Ulna 2008 ...... 0 3 0 0 0 3 145 TablePatella/ 7.4.3(a) Bone-Patella-Bone Distribution of Tissue1 Graft Types 1 (breakdowns), 4 2 2004-2008...... 146 7 15 TableOthers 7.4.4:(Type not Distribution stated) of Graft Sterilization3 0 Types, 2004-2008 0 0 ...... 0 3 146 TableDeep Frozen 7.4.5: TendonDistribution of Mode of Transport Storage to Recipient Hospital during Achilles TendonTransportation, 2004-20080 ...... 0 0 2 1 3 146 TableQuadriceps 7.4.6: Tendon Distribution of Temperature0 of Storage 0 during 0 Transportation, 0 5 2004-20085 Others (Type not stated) 0 0 1 3 3 ...... 7 147 Freeze Dried Bone Table 7.5.1: Distribution of Mode of Storage in Recipient Hospital, 2004-2008 ...... 148 Cancellous chip 17 19 37 2 27 102 Table 7.5.2: Distribution of Additional Tissue Usage (Composite Graft), 2004-2008 148 Cortical 2 0 0 0 0 2 TableCortico-cancellous 7.5.3: Distribution of Presence5 of Pre Operative 2 0Inf ection 0at Implant 0 Site, 2004-7 Others (Type not2008 stated) ...... 0 0 0 8 0 8 148 TableSkin 7.5.4: Distribution of Pre Implant Graft Cultural Swab, 2004-2008 ...... 149 TableDeep Frozen 7.5.5: Skin Distribution of Grafts Soaked0 in 0 Antibiotic 0 s Prior to 0 Transplantation, 36 36 Amniotic membrane2004-2008 ...... 149 TableAir-dried 7.5.6: & Glycerol Distribution Preserved of Number 1128 of Transplant 64 by 379Sy stemic175 Antibiotics 2081 Given 3827Prior Total to Transplantation, 2004-20081224 ...... 190 506 265 2234 4419 150

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FifthFifth Fifth Report Report Report of of of the the the NationalNational National TransplantTransplant Transplant RegistryRegistry Registry 20082008 2008 BONEBONE AND AND TISSUE TISSUE TRANSPLANTATION TRANSPLANTATION

Table 7.1.2 Hospitals/Other Sectors Using Bone, Tendon and Skin Allografts Provided 7.0 INTRODUCTION by USM Tissue Bank, 2004-2008 No. of pieces Recipients The first part of this chapter presents data on tissue2004 allografts 2005 that 2006 have 2007been distributed 2008 Total andMOH data about recipient centres. These data were provided by Universiti Sains Hospital Sultanah Bahiyah, Alor Setar 1 10 6 2 0 19 MalaysiaHospital Umum (USM) Sarawak, Tissue Kuching Bank as the bank involves3 in 13 human 10 tissue 6 procurement, 3 35 processing,Hospital Ipoh storage and distribution. However, there0 are 4 other 9 centres/hospitals 3 0 that16 participatedHospital Kemaman in these activities but did not report to NTR.0 0 10 0 0 10 Hospital Sultanah Nurzahirah, Kuala Terengganu 0 0 2 0 0 2 Hospital Melaka 1 0 0 3 0 4 TheHospital second Pulau Pinang part presents data obtained from 5 the Bone 1 and 7 Tissue 7 Transplant 0 20 NotificationQueen Elizabeth Form Hospital, submitted Kota Kinabalu by surgeons to NTR. 0The data 0 is tabulated 12 2 from 02004 to14 2008Hospital to Raja identify Perempuan the Zainab trend II, of Kota tissue Bharu transplant activities.5 2 The notifi 1 cation 0 is still 8 very16 Hospital Seberang Jaya, Pulau Pinang 0 2 0 3 0 5 poorHospital and Selayang the limited data has restricted further analysis0 and 0 definitive 3 conclusions 0 0 could3 notHospital be made. Seremban 2 2 1 0 0 5 Hospital Sultanah Aminah, Johor Bahru 9 19 11 1 0 40 Thus,Hospital the Sultan report Ismail, does Johor notBahru reflect the actual magnitude0 0 of human 0 tissue 2 supply 73 and75 Hospital Tengku Ampuan Afzan, Kuantan 0 1 2 0 0 3 transplantHospital Tengku activity Ampuan in Rahimah, the country. Klang The deficiency0 would 5 affect 0 the 0 evaluation 0 and5 planningHospital Muar of the tissue transplant programme and service0 by 0 the Mini 0 stry 0 of Health 2 and2 otherTotal organisations. 26 59 74 29 86 274

University Hospitals AggressiveHUSM and continuous effort has to be made39 to ensure 23 that 30 all 3 cases 20of tissue115 allograftHUKM transplantation are reported. In addition, 3the Ministry 2 of 3 Health 5 has 0to make13 newUMMC initiatives to enforce notification to NTR 9 by other 3 centres/hospitals 0 0 0 that are12 Total 51 28 33 8 20 140 involved in tissue allograft provision. Private and other sectors Amin Dental Surgery, Johor Bahru 0 0 0 5 0 5 Antal Rastu Sdn Bhd 0 0 2 0 0 2 Borneo Indah Sdn. Bhd. 0 0 0 0 4 4 Chong Dental Surgery, Seri Kembangan Selangor 0 0 0 1 0 1 Hospital Fatimah, Ipoh 1 12 0 2 11 26 Pantai Medical Centre, Air Keroh 0 0 5 0 0 5 Mahkota Medical Centre, Melaka 0 2 1 0 0 3 Hospital Tawakal, KL 0 0 0 3 9 12 Hospital Tung Shin, Kuala Lumpur 0 2 0 0 0 2 Jasa Dental Surgery, Kuala Lumpur 5 0 0 0 0 5 Johnson & Johnson Medical 0 0 0 2 16 18 Kemajuan Abadi Sdn. Bhd. 0 5 0 2 0 7 Klinik Pergigian Chong, Tangkak, Johor 0 0 0 1 0 1 Kota Bahru Medical Centre, Kota Bharu 0 0 2 0 0 2 Lam Wah Ee Hospital, Pulau Pinang 0 0 3 0 0 3 Normah Medical Center, Kuching 0 0 0 3 3 6 Pantai Medical Center, Bangsar 0 0 0 1 0 1 Island Hospital, Pulau Pinang 0 0 0 0 1 1 Sentosa Medical Centre, Kuala Lumpur 0 1 0 0 0 1 Sri Kota Medical Centre, Klang 2 0 0 0 0 2 Stryker 2 4 6 12 20 44 Sunway Medical Centre, Selangor 0 0 1 0 0 1 Teo Orthopaedic, Kuala Lumpur 0 10 0 0 0 10 Zimmer 9 3 0 21 18 51 Kuching Specialist Hospital, Sarawak 0 0 0 0 1 1 Total 19 39 20 53 83 214

Grand Total 96 126 127 90 189 628

138140

InIn 20082008 andand inin thethe previousprevious years,years, thethe mainmain titissuessue allograftsallografts thatthat werewere distributeddistributed werewere amnioticamniotic membranesmembranes andand deep-frozendeep-frozen femoralfemoral headsheads (Table(Table 7.1.1).7.1.1). USMUSM TissueTissue BankBank providedprovided tissuetissue allograftsallografts toto thethe MinistryMinistry ofof HealthHealth hospitahospitals,ls, privateprivate hospitalshospitals andand otherother sectorssectors (Table(Table 7.1.27.1.2 andand 7.1.3).7.1.3).

TableTable 7.1.17.1.1 TypesTypes ofof TissueTissue AllografAllograftsts SuppliedSupplied byby USMUSM TissueTissue Bank,Bank, 2004-20082004-2008 No.No. ofof piecespieces TypesTypes ofof TissueTissue AllograftAllograft 20042004 2005 2005 2006 2006 2007 2007 2008 2008 Total Total DeepDeep FrozenFrozen BoneBone KneeKnee SlicesSlices 11 0 0 0 0 0 0 0 0 11 FemurFemur 99 7 7 5 5 2 2 7 7 3030 FemoralFemoral HeadHead 5050 88 88 75 75 65 65 54 54 332332 HumerusHumerus 11 3 3 0 0 2 2 2 2 88 TibiaTibia 66 1 1 4 4 4 4 8 8 2323 RadiusRadius 11 2 2 1 1 0 0 3 3 77 UlnaUlna 00 3 3 0 0 0 0 0 0 33 Patella/Patella/ Bone-Patella-BoneBone-Patella-Bone 11 1 1 4 4 2 2 7 7 1515 OthersOthers (Type(Type notnot stated)stated) 33 0 0 0 0 0 0 0 0 33 DeepDeep FrozenFrozen TendonTendon AchillesAchilles TendonTendon 00 0 0 0 0 2 2 1 1 33 QuadricepsQuadriceps TendonTendon 00 0 0 0 0 0 0 5 5 55 OthersOthers (Type(Type notnot stated)stated) 00 0 0 1 1 3 3 3 3 77 FreezeFreeze DriedDried BoneBone CancellousCancellous chipchip 1717 19 19 37 37 2 2 27 27 102102 CorticalCortical 22 0 0 0 0 0 0 0 0 22 Cortico-cancellousCortico-cancellous 55 2 2 0 0 0 0 0 0 77 OthersOthers (Type(Type notnot stated)stated) 00 0 0 0 0 8 8 0 0 88 SkinSkin DeepDeep FrozenFrozen SkinSkin 00 0 0 0 0 0 0 36 36 3636 AmnioticAmniotic membranemembrane Air-driedAir-dried && GlycerolGlycerol PreservedPreserved 1128 1128 64 64 379 379 175 175 2081 2081 38273827 TotalTotal 12241224 190 190 506 506 265 265 2234 2234 4419 4419

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FifthFifth Fifth Report Report Report of of of the the the National Transplant Registry 2008 National National Transplant Transplant Registry Registry 2008 2008 BONEBONE AND AND TISSUE TISSUE TRANSPLANTATION TRANSPLANTATION

TableTable 7.1.2 7.1.2 Hospitals/Other Hospitals/Other Sectors Sectors Us Usinging Bone, Bone, Tendon Tendon and and Skin Skin Allografts Allografts Provided Provided byby USM USM Tissue Tissue Bank, Bank, 2004-2008 2004-2008 No.No. of ofpieces pieces RecipientsRecipients 20042004 2005 2005 2006 2006 2007 2007 2008 2008 Total Total MOHMOH HospitalHospital Sultanah Sultanah Bahiyah, Bahiyah, Alor Alor Setar Setar 1 1 10 10 6 6 2 2 0 0 1919 HospitalHospital Umum Umum Sarawak, Sarawak, Kuching Kuching 3 3 13 13 10 10 6 6 3 3 3535 HospitalHospital Ipoh Ipoh 0 0 4 4 9 9 3 3 0 0 1616 HospitalHospital Kemaman Kemaman 0 0 0 0 10 10 0 0 0 0 1010 HospitalHospital Sultanah Sultanah Nurzahirah, Nurzahirah, Kuala Kuala Terengganu Terengganu 0 0 0 0 2 2 0 0 0 0 2 2 HospitalHospital Melaka Melaka 1 1 0 0 0 0 3 3 0 0 4 4 HospitalHospital Pulau Pulau Pinang Pinang 5 5 1 1 7 7 7 7 0 0 2020 QueenQueen Elizabeth Elizabeth Hospital, Hospital, Kota Kota Kinabalu Kinabalu 0 0 0 0 12 12 2 2 0 0 1414 HospitalHospital Raja Raja Perempuan Perempuan Zainab Zainab II, II, Kota Kota Bharu Bharu 5 5 2 2 1 1 0 0 8 8 1616 HospitalHospital Seberang Seberang Jaya, Jaya, Pulau Pulau Pinang Pinang 0 0 2 2 0 0 3 3 0 0 5 5 HospitalHospital Selayang Selayang 0 0 0 0 3 3 0 0 0 0 3 3 HospitalHospital Seremban Seremban 2 2 2 2 1 1 0 0 0 0 5 5 HospitalHospital Sultanah Sultanah Aminah, Aminah, Johor Johor Bahru Bahru 9 9 19 19 11 11 1 1 0 0 4040 HospitalHospital Sultan Sultan Ismail, Ismail, Johor Johor Bahru Bahru 0 0 0 0 0 0 2 2 73 73 7575 HospitalHospital Tengku Tengku Ampuan Ampuan Afzan, Afzan, Kuantan Kuantan 0 0 1 1 2 2 0 0 0 0 3 3 HospitalHospital Tengku Tengku Ampuan Ampuan Rahimah, Rahimah, Klang Klang 0 0 5 5 0 0 0 0 0 0 5 5 HospitalHospital Muar Muar 0 0 0 0 0 0 0 0 2 2 2 2 TotalTotal 2626 59 59 74 74 29 29 86 86 274 274

UniversityUniversity Hospitals Hospitals HUSMHUSM 3939 23 23 30 30 3 3 20 20 115115 HUKMHUKM 3 3 2 2 3 3 5 5 0 0 1313 UMMCUMMC 9 9 3 3 0 0 0 0 0 0 1212 TotalTotal 5151 28 28 33 33 8 8 20 20 140 140

PrivatePrivate and and other other sectors sectors AminAmin Dental Dental Surgery, Surgery, Johor Johor Bahru Bahru 0 0 0 0 0 0 5 5 0 0 5 5 AntalAntal Rastu Rastu Sdn Sdn Bhd Bhd 0 0 0 0 2 2 0 0 0 0 2 2 BorneoBorneo Indah Indah Sdn. Sdn. Bhd. Bhd. 0 0 0 0 0 0 0 0 4 4 4 4 ChongChong Dental Dental Surgery, Surgery, Seri Seri Kembangan Kembangan Selangor Selangor 0 0 0 0 0 0 1 1 0 0 1 1 HospitalHospital Fatimah, Fatimah, Ipoh Ipoh 1 1 12 12 0 0 2 2 11 11 2626 PantaiPantai Medical Medical Centre Centre, Air, Air Keroh Keroh 0 0 0 0 5 5 0 0 0 0 5 5 MahkotaMahkota Medical Medical Centre, Centre, Melaka Melaka 0 0 2 2 1 1 0 0 0 0 3 3 HospitalHospital Tawakal, Tawakal, KL KL 0 0 0 0 0 0 3 3 9 9 1212 HospitalHospital Tung Tung Shin, Shin, Kuala Kuala Lumpur Lumpur 0 0 2 2 0 0 0 0 0 0 2 2 JasaJasa Dental Dental Surgery, Surgery, Kuala Kuala Lumpur Lumpur 5 5 0 0 0 0 0 0 0 0 5 5 JohnsonJohnson & &Johnson Johnson Medical Medical 0 0 0 0 0 0 2 2 16 16 1818 KemajuanKemajuan Abadi Abadi Sdn. Sdn. Bhd. Bhd. 0 0 5 5 0 0 2 2 0 0 7 7 KlinikKlinik Pergigian Pergigian Chong, Chong, Tangkak, Tangkak, Johor Johor 0 0 0 0 0 0 1 1 0 0 1 1 KotaKota Bahru Bahru Medical Medical Centre, Centre, Kota Kota Bharu Bharu 0 0 0 0 2 2 0 0 0 0 2 2 LamLam Wah Wah Ee Ee Hospital, Hospital, Pulau Pulau Pinang Pinang 0 0 0 0 3 3 0 0 0 0 3 3 NormahNormah Medical Medical Center, Center, Kuching Kuching 0 0 0 0 0 0 3 3 3 3 6 6 PantaiPantai Medical Medical Center, Center, Bangsar Bangsar 0 0 0 0 0 0 1 1 0 0 1 1 IslandIsland Hospital, Hospital, Pulau Pulau Pinang Pinang 0 0 0 0 0 0 0 0 1 1 1 1 SentosaSentosa Medical Medical Centre, Centre, Kuala Kuala Lumpur Lumpur 0 0 1 1 0 0 0 0 0 0 1 1 SriSri Kota Kota Medical Medical Centre, Centre, Klang Klang 2 2 0 0 0 0 0 0 0 0 2 2 StrykerStryker 2 2 4 4 6 6 12 12 20 20 4444 SunwaySunway Medical Medical Centre, Centre, Selangor Selangor 0 0 0 0 1 1 0 0 0 0 1 1 TeoTeo Orthopaedic, Orthopaedic, Kuala Kuala Lumpur Lumpur 0 0 10 10 0 0 0 0 0 0 1010 ZimmerZimmer 9 9 3 3 0 0 21 21 18 18 5151 KuchingKuching Specialist Specialist Hospital, Hospital, Sarawak Sarawak 0 0 0 0 0 0 0 0 1 1 1 1 TotalTotal 1919 39 39 20 20 53 53 83 83 214 214

GrandGrand Total Total 9696 126 126 127 127 90 90 189 189 628 628

140140

UniversityDeep Frozen Hospitals Tendon HUSMAchilles Tendon 0 0 1001 0 1 82 7 1 4 10213 HUKMQuadriceps Tendon 0 0 4 0 0 0 7 5 32 543 UMMCOthers (Type not stated) 0 0 5 1 0 63 0 3 5 716 IIUM 0 0 0 6 0 6 Freeze Dried Bone Total 1010 1 14 20 41 1086 Cancellous chip 17 19 37 2 27 102 PrivateCortical and other sectors 2 0 0 0 0 2 GleneaglesCortico-cancellous Medical Centre, Pulau Pinang 5 2 2 0 4 80 0 0 6 720 HospitaOthers Mata(Type Tun not Hussein stated) Onn 0 0 0 0 4 08 0 0 5 8 9 Hospital Tawakal, KL 0 0 4 0 0 4 ISECSkin Sdn. Bhd. 0 0 0 2 0 2 KlinikDeep Iman,Frozen Seremban Skin 0 0 0 0 1 0 0 36 0 361 KualaAmniotic Terengganu membrane Specialist Center, Kuala Terengganu 0 0 0 3 0 3 PeterAir-dried Kong &Eye Glycerol Clinic, Kota Preserved Kinabalu 1128 64 0 379 0 175 0 0 2081 2 38272 Pusat Rawatan Islam Al-Zahirah, Bangi, Selangor 0 0 10 0 0 10 Total 1224 190 506 265 2234 4419 Puteri Specialist Hospital, Johor Bahru 0 5 0 5 0 10 Putra Medical Centre, Alor Setar 0 0 1 1 0 2 Sri Kota Medical Centre, Klang 0 2 4 0 2 8 CryoCord Sdn. Bhd. 0 0 0 0 2081 2081 Total 2 16 27 11 2096 2152

Grand Total 1128 64 379 175 2195 3941

141139

7.2Table Reporting 7.1.2 Hospitals/Other Centre Sectors Using Bone, Tendon and Skin Allografts Provided by USM Tissue Bank, 2004-2008 No. of pieces TheRecipients recipient centres that reported to the National Transplant Registry using the Bone and Tissue Transplant Notification Form are shown2004 on Table 2005 7.2.1. 2006 The 2007 total number 2008 Total of MOH reportingHospital Sultanah centres Bahiyah, in 2008 Alor has Setar decreased compared to1 previous 10 years. 6 2 0 19 Hospital Umum Sarawak, Kuching 3 13 10 6 3 35 TableHospital 7.2.1 Ipoh Distribution of Reporting Centre, 2004-20080 4 9 3 0 16 Hospital Kemaman 0 0 200 10 200 0 200 0200 Tot10 Reporting centre 2004 Hospital Sultanah Nurzahirah, Kuala Terengganu 0 0 5 2 6 0 7 0 8 al2 OrthopaedicsHospital Melaka Department 1 0 0 3 0 4 DepartmentHospital Pulau of Orthopaedics, Pinang HUSM 5 11 7 2 7 1 0 0 1120 InstituteQueen ofElizabeth Orthopaedic Hospital, & Traumatology, Kota Kinabalu Hospital Kuala Lumpur 0 0 2 12 0 0 2 0 0 0 214 DepartmentHospital Raja of Orthopaedics Perempuan Zainab Surgery, II, UMMC Kota Bharu 5 21 01 0 0 0 8 0 116 DepartmentHospital Seberang of Orthopaedics, Jaya, Pulau Hospital Pinang Pulau Pinang 0 20 0 0 3 1 0 0 15 DepartmentHospital Selayang of Orthopaedics, Hospital Ipoh 0 0 13 0 0 0 0 0 13 DepartmentHospital Seremban of Orthopaedics, Hospital Raja Perempuan Zainab II 2 29 31 0 0 0 0 0 125 DepartmentHospital Sultanah of Orthopaedics, Aminah, HoJohorspital Bahru Umum Sarawak 9 191 11 0 1 1 0 0 0 240 DepartmentHospital Sultan of Orthopaedics, Ismail, Johor Ho Bahruspital Tengku Ampuan Afzan 0 0 0 0 2 1 73 0 175 DepartmentHospital Tengku of Orthopaedics, Ampuan Afzan, Hospital Kuantan Sultanah Aminah 0 10 12 0 0 0 0 0 13 WanHospital Orthopaedic, Tengku TraumaAmpuan & Rahimah, Sports Injury Klang Centre (WOTSIC), 0 5 0 0 0 5 0 0 2 0 0 2 SerembanHospital Specialist Muar Hospital 0 0 0 0 2 2 DepartmentTotal of Orthopaedics, Island Hospital, Pulau Pinang 26 590 74 1 0 29 0 86 0 2741 Department of Orthopaedics, Normah Medical Specialist Centre, 0 1 0 0 0 1 KuchingUniversity Hospitals DepartmentHUSM of Orthopaedics, Hospital Fatimah, Ipoh 39 230 30 3 0 3 1 20 0 1154 DepartmentHUKM of Orthopaedics, Kota Bharu Medical Centre 3 20 03 2 5 0 0 0 213 DepartmentUMMC of Orthopaedics, Pantai Medical Centre, Kuala Lumpur 9 30 0 0 0 1 0 0 112 DepartmentTotal of Orthopaedics, Gleneagles Medical Centre, Pulau Pinang51 28 0 33 0 0 8 0 20 1 1401 Department of Orthopaedics, Penang Adventis Hospital, Pulau Pinang 0 0 0 0 1 1 SpinePrivate Unit, and HUSM other sectors 0 0 1 0 0 1 TotalAmin Dental Surgery, Johor Bahru 0 14 0 17 0 8 5 5 0 2 465 Antal Rastu Sdn Bhd 0 0 2 0 0 2 OphthalmologyBorneo Indah Sdn. Department Bhd. 0 0 0 0 4 4 DepartmentChong Dental of Ophthalmology, Surgery, Seri Kembangan Hospital Tengku Selangor Am puan Rahimah, 0 0 0 1 0 1 1 1 0 0 0 2 KlangHospital Fatimah, Ipoh 1 12 0 2 11 26 DepartmentPantai Medical of Ophthalmology, Centre, Air Keroh Hospital Tengku Ampuan Afzan, 0 0 5 0 0 5 1 1 0 0 0 2 KuantanMahkota Medical Centre, Melaka 0 2 1 0 0 3 DepartmentHospital Tawakal, of Ophthalmology, KL Hospital Teluk Intan 0 00 0 1 3 0 9 0 112 DepartmentHospital Tung of Ophthalmology, Shin, Kuala Lumpur Hospital Kuala Lumpur 0 20 0 23 0 20 0 15 582 DepartmentJasa Dental of Surgery, Ophthalmology, Kuala Lumpur Hospital Sultanah Bahiyah, Alor Setar5 0 0 1 0 0 0 0 15 DepartmentJohnson & of Johnson Ophthalmology, Medical Hospital Sungai Buloh 0 00 0 0 2 9 16 0 918 DepartmentKemajuan of Abadi Ophthalmology, Sdn. Bhd. Hospital Umum Sarawak 0 50 0 0 2 0 0 1 17 DepartmentKlinik Pergigian of Ophthalmology, Chong, Tangkak, Sri Ko Johorta Medical Centre, Klang 0 00 10 0 1 0 0 0 11 DepartmentKota Bahru of Medical Ophthalmology, Centre, Kota HUSM Bharu 0 00 02 1 0 2 0 2 52 PusatLam Pakar Wah MataEe Hospital, Centre ForPulau Sight Pinang 0 00 03 0 0 0 0 1 13 TotalNormah Medical Center, Kuching 0 02 30 26 3 31 3 19 816 Pantai Medical Center, Bangsar 0 0 0 1 0 1 OthersIsland Hospital, Pulau Pinang 0 0 0 0 1 1 MaxillofacialSentosa Medical Surgery, Centre, HUSM Kuala Lumpur 0 11 10 0 0 0 0 0 21 TimberlandSri Kota Medical Medical Centre, Centre, Klang Kuching 2 00 10 0 0 0 0 0 12 SriStryker Kota Medical Centre, Klang 2 40 06 1 12 0 20 0 144 TotalSunway Medical Centre, Selangor 0 01 21 1 0 0 0 0 41 Teo Orthopaedic, Kuala Lumpur 0 10 0 0 0 10 GrandZimmer Total 9 17 3 22 0 35 21 36 18 21 13151 Kuching Specialist Hospital, Sarawak 0 0 0 0 1 1 Total 19 39 20 53 83 214

Grand Total 96 126 127 90 189 628

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FifthFifthFifth ReportReport Report of ofof the thethe National Transplant Registry 2008 BONE BONE ANDAND TISSUETISSUE TRANSPLANTATIONTRANSPLANTATION NationalNational TransplantTransplant RegistryRegistry 20082008 7.37.1 RecipientsSTOCK OF Details TISSUE ALLOGRAFTS AND HOSPITALS WHERE TISSUES ARE UTILISED FROM 2004 TO 2008 The bone and tissue allografts recipients’ gender (Table 7.3.1), ethnicity (Table 7.3.1), ageIn 2008 (Table and 7.3.3) in the and previous diagnosis years, (Table the 7.3.4)main tiaressue presented allografts in thisthat section.were distributed One patient were canamniotic undergo membranes more than and 1 transplant. deep-frozen femoral heads (Table 7.1.1). USM Tissue Bank provided tissue allografts to the Ministry of Health hospitals, private hospitals and other Tablesectors 7.3.1 (Table Distribution 7.1.2 and of7.1.3). Number of Transplant by Gender, 2004-2008 2004 2005 2006 2007 2008 Total Gender Table 7.1.1No. Types %of Tissue No. Allograf % ts No. Supplied % by No. USM Tissue % No. Bank, %2004-2008 No. % Male 9 53 10 45 27 77 21 58 9 43 76 58 No. of pieces FemaleTypes of Tissue 8 Allograft 47 12 55 8 23 15 42 12 57 55 42 2004 2005 2006 2007 2008 Total Total 17 100 22 100 35 100 36 100 21 100 131 100 Deep Frozen Bone Knee Slices 1 0 0 0 0 1 TableFemur 7.3.2 Distribution of Number 9of Transpla 7 nt by Ethnic 5 Group, 2 2004-2008 7 30 2004 2005 2006 2007 2008 Total RaceFemoral Head 50 88 75 65 54 332 Humerus No. % No. 1 % No. 3 % 0 No. % 2 No. % 2 No. 8 % MalayTibia 11 65 14 6 64 261 74 4 18 50 4 11 52 8 80 23 61 ChineseRadius 3 18 5 1 23 2 7 20 1 12 33 0 6 29 3 33 7 25 IndianUlna 1 6 1 0 5 3 1 3 0 4 11 0 1 0 5 8 3 6 BumiputraPatella/ Bone-Patella-Bone Sabah 0 0 0 1 0 1 0 0 4 0 0 2 1 7 5 1 15 1 BumiputraOthers (Type Sarawak not stated) 1 6 0 3 0 0 0 0 0 1 3 0 0 0 0 2 3 2 OthersDeep Frozen Tendon 1 6 2 9 1 3 1 3 2 10 7 5 TotalAchilles Tendon 17 100 22 0 100 350 100 0 36 100 2 21 100 1 131 3 100 Quadriceps Tendon 0 0 0 0 5 5 TableOthers 7.3.3(Type Distributionnot stated) of Number 0of Transplant 0 by Age 1 Group, 3 2004-2008 3 7 2004 2005 2006 2007 2008 Total AgeFreeze group Dried Bone Cancellous chip No. % No. %17 No. 19 % No. 37 % 2 No. % 27 No. 102 % 0-9Cortical 0 0 1 5 2 4 0 11 5 0 14 0 4 19 0 14 2 11 10-11Cortico-cancellous 1 6 6 275 2 2 6 1 0 3 0 5 24 0 15 7 11 20-39Others (Type not stated) 9 53 6 270 16 0 46 8 0 22 8 5 24 0 44 8 34 40-59Skin 5 29 3 14 8 23 11 31 4 19 31 24 Deep60 Frozen Skin2 12 5 230 5 0 14 10 0 28 0 3 14 36 25 36 19 MissingAmniotic membrane 0 0 1 5 0 0 1 3 0 0 2 2 TotalAir-dried & Glycerol 17 Preserved 100 22 100 1128 35 64 100 36 379 100 175 21 100 2081 131 3827 100 MeanTotal 37 36 1224 37190 506 42 265 30 2234 37 4419 SD 16 23 20 23 23 22 Median 35 27 36 49 27 35 Min 15 7 0 0 1 0 Max 75 80 77 80 69 80

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TableTable 7.3.4 7.1.2 Distribution Hospitals/Other of Nu Sectorsmber of Us Transplanting Bone, by Tendon Diagnosis and SkinWarranting Allografts Tissue Provided Graft,by USM 2004-2008 Tissue Bank, 2004-2008 2004 2005 2006 2007 No. of pieces 2008 Total DiagnosisRecipients No. % No. % No. 2004 % 2005No. % 2006 No. 2007 % 2008 No. Total %

CongenitalMOH deformity 1 6 0 0 1 3 1 3 1 5 4 3 Hospital Sultanah Bahiyah, Alor Setar 1 10 6 2 0 19 InfectionHospital Umum Sarawak, Kuching0 0 0 0 3 3 8 133 8 10 2 6 10 38 635 TraumaHospital Ipoh 5 28 1 5 6 0 16 1 4 3 9 1 3 5 014 1016 DegenerativeHospital Kemaman disease 1 6 2 9 0 0 0 1 0 3 10 1 0 5 05 410 TumourHospital - benignSultanah Nurzahirah, Kuala 5 Terengganu 28 4 18 1 0 3 1 0 3 2 0 0 0 011 82 Hospital Melaka 1 0 0 3 0 4 TumourHospital - malignantPulau Pinang 0 0 6 27 1 5 3 0 1 0 7 0 7 0 07 520 BurnQueen Elizabeth Hospital, Kota0 Kinabalu 0 1 5 2 0 5 0 0 0 12 0 2 0 03 214 ScaldHospital Raja Perempuan Zainab0 II, Kota 0 Bharu 0 0 1 5 3 0 2 0 1 0 0 0 81 116 SportsHospital injury Seberang Jaya, Pulau 0Pinang 0 1 5 0 0 0 1 2 3 0 0 3 0 02 15 FailedHospital primary Selayang surgery 1 6 2 9 1 0 3 2 0 5 3 0 0 0 06 43 Hospital Seremban 2 2 1 0 0 5 OphtalmologicalHospital Sultanah disease Aminah, Johor 0 Bahru 0 0 0 16 9 42 197 19 11 4 1 19 027 2040 OthersHospital Sultan Ismail, Johor Bahru5 28 3 14 6 0 16 20 0 54 0 11 2 52 7345 3375 MissingHospital Tengku Ampuan Afzan,0 Kuantan 0 2 9 0 0 0 0 1 0 2 1 0 5 03 23 TotalHospital Tengku Ampuan Rahimah,18 Klang 100 22 100 38 0 100 37 5 100 0 21 0 100 136 0 1005 Hospital Muar 0 0 0 0 2 2 * Total1 transplantation performed in 2004 and 2007 had26 2 diagnosis. 59 74 29 86 274 * 3 transplantations performed in 2006 had 2 diagnosis. University Hospitals HUSM 39 23 30 3 20 115 HUKM 3 2 3 5 0 13 UMMC 9 3 0 0 0 12 Total 51 28 33 8 20 140

Private and other sectors Amin Dental Surgery, Johor Bahru 0 0 0 5 0 5 Antal Rastu Sdn Bhd 0 0 2 0 0 2 Borneo Indah Sdn. Bhd. 0 0 0 0 4 4 Chong Dental Surgery, Seri Kembangan Selangor 0 0 0 1 0 1 Hospital Fatimah, Ipoh 1 12 0 2 11 26 Pantai Medical Centre, Air Keroh 0 0 5 0 0 5 Mahkota Medical Centre, Melaka 0 2 1 0 0 3 Hospital Tawakal, KL 0 0 0 3 9 12 Hospital Tung Shin, Kuala Lumpur 0 2 0 0 0 2 Jasa Dental Surgery, Kuala Lumpur 5 0 0 0 0 5 Johnson & Johnson Medical 0 0 0 2 16 18 Kemajuan Abadi Sdn. Bhd. 0 5 0 2 0 7 Klinik Pergigian Chong, Tangkak, Johor 0 0 0 1 0 1 Kota Bahru Medical Centre, Kota Bharu 0 0 2 0 0 2 Lam Wah Ee Hospital, Pulau Pinang 0 0 3 0 0 3 Normah Medical Center, Kuching 0 0 0 3 3 6 Pantai Medical Center, Bangsar 0 0 0 1 0 1 Island Hospital, Pulau Pinang 0 0 0 0 1 1 Sentosa Medical Centre, Kuala Lumpur 0 1 0 0 0 1 Sri Kota Medical Centre, Klang 2 0 0 0 0 2 Stryker 2 4 6 12 20 44 Sunway Medical Centre, Selangor 0 0 1 0 0 1 Teo Orthopaedic, Kuala Lumpur 0 10 0 0 0 10 Zimmer 9 3 0 21 18 51 Kuching Specialist Hospital, Sarawak 0 0 0 0 1 1 Total 19 39 20 53 83 214

Grand Total 96 126 127 90 189 628

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FifthFifthFifth ReportReport Report of ofof the thethe National Transplant Registry 2008 BONE BONE ANDAND TISSUETISSUE TRANSPLANTATIONTRANSPLANTATION NationalNational TransplantTransplant RegistryRegistry 20082008 7.47.1 Pre-TransplantSTOCK OF TISSUE Data ALLOGRAFTS AND HOSPITALS WHERE TISSUES ARE UTILISED FROM 2004 TO 2008 This section presents data on the tissue provider (Table 7.4.1), origin of tissue graft (TableIn 2008 7.4.2), and in tissue the previous graft type years, (Table the main 7.4.3), ti ssue type allografts of sterilisation that were of thedistributed graft (Table were 7.4.4),amniotic mode membranes of transport and storagedeep-frozen of tissue femoral graft heads to recipient (Table 7.1.1).hospital USM(Table Tissue 7.4.5) Bank and temperatureprovided tissue of storage allografts tissue to thegraf Ministryt during oftransportation Health hospita (Tablels, private 7.4.6). hospitals and other sectors (Table 7.1.2 and 7.1.3). Table 7.4.1 Distribution of Number of Transplantation according to Tissue Provider, 2004-2008Table 7.1.1 Types of Tissue Allografts Supplied by USM Tissue Bank, 2004-2008 2004 2005 2006 No. of 2007 pieces 2008 Total TypesName ofof TissueTissue AllograftBank No. % 2004 No. % 2005 No. % 2006 No. 2007 % No. 2008 % No. Total % DeepUSM Frozen Tissue BankBone 13 76 18 82 31 89 34 94 21 100 117 89 KneeBone Slices Bank, UMMC 1 6 01 0 0 0 0 0 0 0 0 0 0 0 1 1 1 FemurBone Bank, Hospital 9 7 5 2 7 30 Kuala Lumpur 3 18 0 0 0 0 0 0 0 0 3 2 Femoral Head 50 88 75 65 54 332 Eucara Pharmaceutical Humerus(P) Ltd., India 0 0 01 0 3 2 6 0 0 0 2 0 2 0 2 8 2 TibiaOsteo Tech Inc., USA 0 0 16 5 1 0 0 4 0 0 4 0 8 0 1 23 1 RadiusMissing 0 0 31 14 2 2 6 1 2 6 0 0 3 0 7 7 5 UlnaTotal 17 100 220 100 3 35 100 0 36 100 0 21 1000 131 3 100 Patella/ Bone-Patella-Bone 1 1 4 2 7 15 TableOthers 7.4.2(Type Distributionnot stated) of Number 3of Transplantation 0 0 by Origin 0 of Tissue 0 Graft, 2004-3 2008Deep Frozen Tendon Achilles Tendon 0 0 0 2 1 3 2004 2005 2006 2007 2008 Total OriginQuadriceps of Tissue Tendon Graft 0 0 0 0 5 5 No. % No. % No. % No. % No. % No. % Others (Type not stated) 0 0 1 3 3 7 Local 17 100 15 68 31 89 34 94 20 95 117 89 Freeze Dried Bone Imported 0 0 3 14 2 6 0 0 0 0 5 4 Cancellous chip 17 19 37 2 27 102 Missing 0 0 4 18 2 6 2 6 1 5 9 7 Cortical 2 0 0 0 0 2 Total 17 100 22 100 35 100 36 100 21 100 131 100 Cortico-cancellous 5 2 0 0 0 7

Others (Type not stated) 0 0 0 8 0 8 Table 7.4.3 Distribution of Number of Transplantation by Tissue Graft Types, 2004- Skin 2008Deep Frozen Skin 0 0 0 0 36 36 2004 2005 2006 2007 2008 Total TissueAmniotic graft membrane types Air-dried & Glycerol PreservedNo. % 1128 No. % 64 No. % 379 No. 175 % No. 2081 % No.3827 % DeepTotal frozen tissues 9 53 1224 14 64 190 5 14 506 5 265 14 2 2234 10 35 4419 27 Freeze dried (Lyophilised) 6 35 4 18 29 83 31 86 16 76 86 66 Not Available 2 12 2 9 0 0 0 0 0 0 4 3 Missing 0 0 2 9 1 3 0 0 3 14 6 5 Total 17 100 22 100 35 100 36 100 21 100 131 100

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TableTable 7.4.3(a) 7.1.2 Hospitals/Other Distribution of SectorsTissue Graft Using Types Bone, (breakdowns), Tendon and Skin 2004-2008 Allografts Provided Tissueby USM graft Tissue types Bank,2004 2004-2008 2005 2006 2007 2008 Total (breakdowns) No. % No. % No. % No. % No. No. of pieces % No. % Recipients Femur 3 11 3 7 0 02004 0 2005 0 2006 1 2007 5 2008 7 Total 4 FemoralMOH head 2 7 12 26 2 4 7 18 2 9 25 14 Hospital Sultanah Bahiyah, Alor Setar 1 10 6 2 0 19 HumerusHospital Umum Sarawak,0 Kuching 0 1 2 3 7 3 0 13 0 10 0 6 0 34 235 TibiaHospital Ipoh 1 4 1 2 1 2 0 0 4 0 9 0 3 0 03 216 RadiusHospital Kemaman 2 7 5 11 0 0 0 0 0 0 10 0 0 0 07 410 PatellaHospital Sultanah Nurzahirah,1 Kuala 4 Terengganu 1 2 2 4 0 0 0 0 2 0 0 0 04 2 2 OtherHospital tendon Melaka 1 0 0 3 0 4 0 0 0 0 0 0 1 3 0 0 1 1 fasciaHospital cartilage Pulau Pinang 5 1 7 7 0 20 Queen Elizabeth Hospital, Kota Kinabalu 0 0 12 2 0 14 Amniotic Hospital Raja Perempuan2 Zainab 7 II, Kota 3 Bharu 7 25 56 5 31 2 79 1 19 0 86 80 8 4516 membranesHospital Seberang Jaya, Pulau Pinang 0 2 0 3 0 5 CancellousHospital Selayang 15 56 19 41 2 4 0 0 0 0 3 0 0 0 36 0 203 CorticalHospital Seremban 0 0 0 0 6 13 2 0 2 0 1 0 0 0 06 3 5 CorticalHospital Sultanah Aminah, Johor Bahru 9 19 11 1 0 40 1 4 1 2 0 0 0 0 0 0 2 1 cancellousHospital Sultan Ismail, Johor Bahru 0 0 0 2 73 75 BoneHospital granule Tengku Ampuan0 Afzan, 0 Kuantan 0 0 1 2 0 0 1 0 2 0 0 0 01 1 3 Hospital Tengku Ampuan Rahimah, Klang 0 5 0 0 0 5 BoneHospital powder Muar 0 0 0 0 3 7 0 0 0 0 0 0 0 0 23 2 2 TotalTotal 27 100 46 100 45 10026 39 59 100 74 22 29 100 179 86 100 274

TableUniversity 7.4.4 Hospitals Distribution of Graft Sterilization Types, 2004-2008 HUSM 39 23 30 3 20 115 GraftHUKM sterilization 2004 2005 2006 3 2007 2 3 2008 5 0 Total 13 typesUMMC No. % No. % No. %9 No. 3 % 0 No. 0 % No. 0 %12 GammaTotal irradiation 16 94 15 68 30 8651 27 28 75 33 19 8 90 107 20 82 140 Glycerol 0 0 0 0 2 6 0 0 0 0 2 2 SterilePrivate freeze and otherdried sectors Amin Dental Surgery, Johor0 Bahru 0 1 5 0 00 0 0 0 0 0 5 0 01 15 human bone Antal Rastu Sdn Bhd 0 0 2 0 0 2 MissingBorneo Indah Sdn. Bhd. 1 6 6 27 3 90 9 0 25 0 2 0 10 21 4 164 TotalChong Dental Surgery, Seri17 Kembangan 100 Selangor 22 100 35 1000 36 0 100 0 21 1 100 131 0 1001 Hospital Fatimah, Ipoh 1 12 0 2 11 26 Pantai Medical Centre, Air Keroh 0 0 5 0 0 5 TableMahkota 7.4.5 Medical Distribution Centre, Melaka of Mode of Transport Storage0 to Recipient 2 1 Hospital 0 during 0 3 Transportation,Hospital Tawakal, KL2004-2008 0 0 0 3 9 12 ModeHospital of transport Tung Shin, Kuala Lumpur2004 2005 2006 0 2007 2 0 2008 0 0 Total 2 storageJasa Dental to recipient Surgery, Kuala Lumpur 5 0 0 0 0 5 hospitalJohnson & Johnson MedicalNo. % No. % No. %0 No. 0 % 0 No. 2 % No.16 %18 ByKemajuan flight Abadi Sdn. Bhd.1 6 1 5 2 60 2 5 6 0 1 2 5 07 57 Klinik Pergigian Chong, Tangkak, Johor 0 0 0 1 0 1 By courier 2 12 3 14 24 69 23 64 17 81 69 53 Kota Bahru Medical Centre, Kota Bharu 0 0 2 0 0 2 ByLam hand Wah Ee Hospital, Pulau4 Pinang 24 8 36 1 30 0 0 0 3 0 0 0 13 0 103 DryNormah ice box Medical Center, Kuching5 29 4 18 0 00 0 0 0 0 0 3 0 39 76 SterilePantai package Medical Center, Bangsar0 0 0 0 2 60 0 0 0 0 0 1 0 02 21 MissingIsland Hospital, Pulau Pinang5 29 6 27 6 170 11 0 31 0 3 0 14 31 1 241 Sentosa Medical Centre, Kuala Lumpur 0 1 0 0 0 1 TotalSri Kota Medical Centre, Klang17 100 22 100 35 1002 36 0 100 0 21 0 100 131 0 1002 Stryker 2 4 6 12 20 44 Sunway Medical Centre, Selangor 0 0 1 0 0 1 Teo Orthopaedic, Kuala Lumpur 0 10 0 0 0 10 Zimmer 9 3 0 21 18 51 Kuching Specialist Hospital, Sarawak 0 0 0 0 1 1 Total 19 39 20 53 83 214

Grand Total 96 126 127 90 189 628

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FifthFifthFifth ReportReport Report of ofof the thethe National Transplant Registry 2008 BONE BONE ANDAND TISSUETISSUE TRANSPLANTATIONTRANSPLANTATION NationalNational TransplantTransplant RegistryRegistry 20082008 Table7.1 STOCK 7.4.6 Distribution OF TISSUE of ALLOGRAFTSTemperature of Storage AND HOSPITALS during Transportation, WHERE 2004-2008 TISSUES TemperatureARE UTILISED of storage FROM 20042004 TO 2008 2005 2006 2007 2008 Total during transportation (ºC) No. % No. % No. % No. % No. % No. % -80In 2008 and in the previous2 years, 12 the 0 main 0 tissue 0 allografts 0 0 that 0 were 0 distributed 0 2 were 2 -40amniotic membranes and 0deep-frozen 0 1 femoral 5 heads 0 0(Table 0 7.1.1). 0 USM 0 0Tissue 1 Bank 1 -20provided tissue allografts to4 the 24Ministry 4 of 18 Health 0 hospita 0 ls, 1 private 3 hospitals 0 0 and9 other 7 -10sectors (Table 7.1.2 and 7.1.3).0 0 6 27 2 6 1 3 1 5 10 8 0 2 12 0 0 0 0 0 0 0 0 2 2 37Table 7.1.1 Types of Tissue0 Allograf 0 ts 0 Supplied 0 2by USM 6 Tissue 0 0 Bank, 0 2004-2008 0 2 2 Room temperature 3 18 4 18 25 71 No. 22of pieces 61 17 81 71 54 Types of Tissue Allograft Missing 6 35 2004 7 32 2005 6 2006 17 12 2007 33 3 2008 14 34 Total 26 TotalDeep Frozen Bone 17 100 22 100 35 100 36 100 21 100 131 100 Knee Slices 1 0 0 0 0 1 Femur 9 7 5 2 7 30 Femoral Head 50 88 75 65 54 332 Humerus 1 3 0 2 2 8 Tibia 6 1 4 4 8 23 Radius 1 2 1 0 3 7 Ulna 0 3 0 0 0 3 Patella/ Bone-Patella-Bone 1 1 4 2 7 15 Others (Type not stated) 3 0 0 0 0 3 Deep Frozen Tendon Achilles Tendon 0 0 0 2 1 3 Quadriceps Tendon 0 0 0 0 5 5 Others (Type not stated) 0 0 1 3 3 7 Freeze Dried Bone Cancellous chip 17 19 37 2 27 102 Cortical 2 0 0 0 0 2 Cortico-cancellous 5 2 0 0 0 7 Others (Type not stated) 0 0 0 8 0 8 Skin Deep Frozen Skin 0 0 0 0 36 36 Amniotic membrane Air-dried & Glycerol Preserved 1128 64 379 175 2081 3827 Total 1224 190 506 265 2234 4419

147139

7.5Table Transplant 7.1.2 Hospitals/Other Surgery Data Sectors Using Bone, Tendon and Skin Allografts Provided by USM Tissue Bank, 2004-2008 No. of pieces TheRecipients data on mode of storage of tissues in recipient hospitals are presented in Table 7.5.1. This section also presents the data on the use2004 of composite 2005 2006 graft (Tables 2007 20087.5.2 and Total MOH 7.5.3),Hospital presence Sultanah Bahiyah, of pre Alor operative Setar infection at implant1 site 10 (Table 6 7.5.4), 2 presence 0 of19 infectionHospital Umum of pre Sarawak, implanted Kuching grafts (Tables 7.5.5 and3 7.5.6) 13 and the 10 usage 6 of antibiotics 3 35 (TablesHospital 7.5.7,Ipoh 7.5.8, 7.5.9, and 7.5.10) 0 4 9 3 0 16 Hospital Kemaman 0 0 10 0 0 10 Hospital Sultanah Nurzahirah, Kuala Terengganu 0 0 2 0 0 2 TableHospital 7.5.1 Melaka Distribution of Mode of Storage in Recipient1 Hospital, 0 0 2004-2008 3 0 4 ModeHospital of storage Pulau Pinang in 2004 2005 2006 5 12007 7 2008 7 0 Total 20 recipientQueen Elizabeth hospital Hospital, KotaNo. Kinabalu % No. % No. %0 No. 0 % 12 No. 2 % No. 0 %14 RefrigeratorHospital Raja Perempuan Zainab0 II, 0Kota Bharu 1 5 25 715 28 2 78 1 12 0 57 866 5016 Hospital Seberang Jaya, Pulau Pinang 0 2 0 3 0 5 DeepHospital Freezer Selayang -20 ºC 0 0 3 14 2 0 6 3 0 8 3 0 0 0 08 63 DeepHospital Freezer Seremban -40 ºC 1 6 2 9 0 2 0 0 2 0 1 1 0 5 04 35 DeepHospital Freezer Sultanah -80 ºC Aminah, Johor 3 Bahru 18 4 18 1 9 3 1 19 3 11 0 1 0 09 740 LiquidHospital Nitrogen Sultan Ismail, Johor 0 Bahru 0 0 0 0 0 0 0 0 0 0 2 0 730 075 Hospital Tengku Ampuan Afzan, Kuantan 0 1 2 0 0 3 Glycerol 0 0 1 5 3 9 4 11 6 29 14 11 Hospital Tengku Ampuan Rahimah, Klang 0 5 0 0 0 5 RoomHospital Temperature Muar 0 0 1 5 1 0 3 0 0 0 0 2 0 10 24 32 OthersTotal 12 71 5 23 2 26 6 0 59 0 74 0 29 0 8619 15 274 Not Available 1 6 0 0 0 0 0 0 0 0 1 1 MissingUniversity Hospitals 0 0 5 23 1 3 0 0 0 0 6 5 HUSM 39 23 30 3 20 115 TotalHUKM 17 100 22 100 35 1003 36 2 100 3 21 5 100 131 0 10013 UMMC 9 3 0 0 0 12 TableTotal 7.5.2 Distribution of Additional Tissue Usage51 (Composite 28 Graft), 33 2004-2008 8 20 140 2004 2005 2006 2007 2008 Total AdditionalPrivate and Tissue other sectorsUsed Amin Dental Surgery, Johor No.Bahru % No. % No. 0 % No. 0 % 0 No. 5 % No. 0 %5 YesAntal Rastu Sdn Bhd 9 53 7 32 1 0 3 2 0 6 2 1 0 5 020 152 Borneo • Autografts Indah Sdn. Bhd. 7 41 3 14 0 0 0 0 0 0 0 1 0 5 411 84 Chong • Allografts Dental Surgery, Seri Kembangan1 6 Selangor 2 9 1 0 3 2 0 6 0 0 1 0 06 51 Hospital • Others Fatimah, Ipoh 1 6 1 5 0 1 0 0 12 0 0 0 2 0 112 226 Pantai Medical Centre, Air Keroh 0 0 5 0 0 5 Mahkota • Missing Medical Centre, Melaka0 0 1 5 0 0 0 0 2 0 1 0 0 0 01 13 NoHospital Tawakal, KL 6 35 12 55 32 0 91 33 0 92 0 19 3 90 102 9 7812 NotHospital Available Tung Shin, Kuala Lumpur2 12 1 5 0 0 0 0 2 0 0 0 0 0 0 3 22 MissingJasa Dental Surgery, Kuala Lumpur0 0 2 9 2 5 6 1 0 3 0 1 0 5 0 6 55 Johnson & Johnson Medical 0 0 0 2 16 18 Total 17 100 22 100 35 100 36 100 21 100 131 100 Kemajuan Abadi Sdn. Bhd. 0 5 0 2 0 7 Klinik Pergigian Chong, Tangkak, Johor 0 0 0 1 0 1 TableKota Bahru7.5.3 Medical Distribution Centre, Kota of PresBharuence of Pre Operative0 Infection 0 at 2Implant 0 Site, 02004- 2 2008Lam Wah Ee Hospital, Pulau Pinang 0 0 3 0 0 3 Normah Medical Center, Kuching 0 0 0 3 3 6 PresencePantai Medical of pre Center, operative Bangsar 2004 2005 20060 0 2007 0 2008 1 0 Total 1 infectionIsland Hospital, at implant Pulau site Pinang No. % No. % No. 0 % No. 0 % 0 No. 0 % No.1 %1 YesSentosa Medical Centre, Kuala Lumpur0 0 0 0 4 0 11 1 9 25 0 3 0 14 016 121 NoSri Kota Medical Centre, Klang 15 88 21 95 31 2 89 270 75 0 18 0 86 112 0 852 Stryker 2 4 6 12 20 44 Not Available 2 12 0 0 0 0 0 0 0 0 2 2 Sunway Medical Centre, Selangor 0 0 1 0 0 1 MissingTeo Orthopaedic, Kuala Lumpur 0 0 1 5 0 0 0 10 0 0 0 0 0 0 0 1 110 TotalZimmer 17 100 22 100 35 9 100 363 100 0 21 21 100 18 131 10051 Kuching Specialist Hospital, Sarawak 0 0 0 0 1 1 Total 19 39 20 53 83 214

Grand Total 96 126 127 90 189 628

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FifthFifthFifth ReportReport Report of ofof the thethe National Transplant Registry 2008 BONE BONE ANDAND TISSUETISSUE TRANSPLANTATIONTRANSPLANTATION NationalNational TransplantTransplant RegistryRegistry 20082008 Table7.1 STOCK 7.5.4 Distribution OF TISSUE of ALLOGRAFTSPre Implant Graft ANDCultural HOSPITALS Swab, 2004-2008 WHERE TISSUES PreARE implant UTILISED graft FROM2004 2004 TO 2005 2008 2006 2007 2008 Total cultural swab No. % No. % No. % No. % No. % No. % YesIn 2008 and in the previous0 0 years, 1 the 5main 0ti ssue 0allografts 1 that 3 were 0 distributed 0 2 were 2 amniotic • Cytomegalovirus membranes 0and deep-frozen 0 1 femoral 5 0 heads 0 (Table 0 7.1.1). 0 0 USM 0 Tissue1 Bank 1 provided • Proteus tissue allografts0 to 0 the Ministry 0 0 of Health 0 0 hospita 1 ls, private 3 0 hospitals 0 and1 other 1 Nosectors (Table 7.1.2 and15 7.1.3). 88 16 73 17 49 22 61 18 86 88 67 Not Available 2 12 0 0 6 17 5 14 0 0 13 10 MissingTable 7.1.1 Types of Tissue0 0 Allograf 5 ts 23Supplied 12 by 34 USM 8 Tissue 22 Bank, 3 2004-2008 14 28 21 Total 17 100 22 100 35 100 36 100 21 100 131 100 No. of pieces Types of Tissue Allograft 2004 2005 2006 2007 2008 Total Table 7.5.5 Distribution of Grafts Soaked in Antibiotics Prior to Transplantation, 2004- Deep Frozen Bone 2008 Knee Slices 1 0 0 0 0 1 Grafts soaked in 2004 2005 2006 2007 2008 Total Femurantibiotics prior to 9 7 5 2 7 30 Femoraltransplantation Head No. % No.50 % 88No. % 75 No. % 65 No. 54 % No. 332 % HumerusYes 7 41 16 1 73 3 6 17 0 6 17 2 1 2 5 36 8 27 Tibia • Ceftriazone 4 24 9 6 41 1 3 9 4 0 0 4 0 8 0 16 23 12 Radius • Gentamicin 3 18 4 1 18 2 3 9 1 4 110 1 3 5 15 7 11 Ulna • Povidone iodine, 0 3 0 0 0 3 0 0 1 5 0 0 0 0 0 0 1 1 Patella/Ceftriazone Bone-Patella-Bone 1 1 4 2 7 15 • Ceftriazone and Others (Type not stated) 0 0 0 3 0 0 0 0 0 1 3 0 0 0 0 1 3 1 DeepGentamicin Frozen Tendon • Vancomycin, Achilles Tendon 0 0 1 0 5 0 0 0 0 0 0 2 0 1 0 1 3 1 Postome iodine Quadriceps Tendon 0 0 0 0 5 5 • Missing 0 0 1 5 0 0 1 3 0 0 2 2 Others (Type not stated) 0 0 1 3 3 7 No 8 47 5 23 28 80 28 78 20 95 89 68 Freeze Dried Bone Not Available 2 12 0 0 1 3 0 0 0 0 3 2 Cancellous chip 17 19 37 2 27 102 Missing 0 0 1 5 0 0 2 6 0 0 3 2 Cortical 2 0 0 0 0 2 Total 17 100 22 100 35 100 36 100 21 100 131 100 Cortico-cancellous 5 2 0 0 0 7 Others (Type not stated) 0 0 0 8 0 8 Skin Deep Frozen Skin 0 0 0 0 36 36 Amniotic membrane Air-dried & Glycerol Preserved 1128 64 379 175 2081 3827 Total 1224 190 506 265 2234 4419

149139

TableTable 7.5.6 7.1.2 Distribution Hospitals/Other of Number Sectors of Us Transplanting Bone, by Tendon Systemic and AntibioticsSkin Allografts Given Provided Prior toby Transplantation, USM Tissue Bank, 2004-2008 2004-2008 Systemic antibiotics given 2004 2005 2006 2007 No. of pieces 2008 Total Recipients prioir to transplantation No. % No. % No.2004 % 2005 No. %2006 No. 2007 % 2008 No. Total % YesMOH 12 71 17 77 9 26 10 28 3 14 51 39 Hospital Sultanah Bahiyah, Alor Setar 1 10 6 2 0 19 Hospital • Cefeperazone Umum Sarawak, Kuching2 12 2 9 0 3 0 13 0 0 10 0 6 0 3 4 335 Hospital • Ceftriazone/ Ipoh Imipenam 2 12 2 9 3 0 9 4 3 8 9 0 3 0 010 816 Hospital • Cefuroxine Kemaman 7 41 7 32 4 0 11 0 2 6 10 1 0 5 021 1610 Hospital • Ciproflaxacin Sultanah Nurzahirah, Kuala0 Terengganu 0 2 9 0 0 0 0 2 6 2 1 0 5 0 5 42 Hospital Melaka 1 0 0 3 0 4 • Chloramphenicol 0 0 0 0 1 3 0 0 0 0 1 1 Hospital Pulau Pinang 5 1 7 7 0 20 Queen • Gentamicin Elizabeth Hospital, Kota Kinabalu0 0 0 0 0 0 0 0 0 0 12 1 2 5 0 1 114 Hospital • Metronidazole Raja Perempuan Zainab II,1 Kota 6 Bharu 1 5 0 5 0 2 0 0 1 0 0 0 8 2 216 Hospital • Ceftazidime Seberang Jaya, Pulau Pinang0 0 0 0 1 0 3 2 0 0 0 0 3 0 0 1 15 Hospital • T. Augmentin Selayang 0 0 0 0 0 0 0 0 1 3 3 0 0 0 0 1 13 Hospital Seremban 2 2 1 0 0 5 Hospital • T.Flurariazole Sultanah Aminah, Johor 0Bahru 0 0 0 0 9 0 19 2 6 11 0 1 0 0 2 240 Hospital • Ampicillin Sultan /Ismail, Sulbactam Johor Bahru 0 0 2 9 0 0 0 0 0 0 0 0 2 0 732 275 Hospital • Missing Tengku Ampuan Afzan, 0Kuantan 0 1 5 0 0 0 1 0 0 2 0 0 0 0 1 13 NoHospital Tengku Ampuan Rahimah,4 Klang 24 3 14 26 0 74 526 72 0 17 0 81 0 76 585 Hospital Muar 0 0 0 0 2 2 Not Available 1 6 0 0 0 0 0 0 0 0 1 1 Total 26 59 74 29 86 274 Missing 0 0 2 9 0 0 0 0 1 5 3 2 TotalUniversity Hospitals 17 100 22 100 35 100 36 100 21 100 131 100 HUSM 39 23 30 3 20 115 HUKM 3 2 3 5 0 13 UMMC 9 3 0 0 0 12 Total 51 28 33 8 20 140

Grand Total 96 126 127 90 189 628

150140

CHAPTER 8

CADAVERIC ORGAN AND TISSUE DONATION

Editor: Datin Dr Lela Yasmin Mansor

Expert Panel Datin Dr Lela Yasmin Mansor (chairperson) Dr Hooi Lai Seong Dr Omar Sulaiman Dr Muhammed Anis Abdul Wahab Matron Jamaliah Kario Staff Nurse Santi A/P Krishanan Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 List of Tables ListTable of 8.1:Tables Number of Donations by Year, 1997-2008 ...... 154 TableTable 8.1:8.2: NumberNumber ofof Donationsorgans procured, by Year, 1997-2008 1997-2008...... 155...... 154 TableTable 8.2:8.3: NumberPotential of Donor organs Referrals procured, and 1997-2008 Actual Donations...... 155 by month, 2008 ...... 155 TableTable 8.3:8.4: PotentialDistribution Donor of DonorsReferrals by and Age, Actual 1997-2008…………………………..…157 Donations by month, 2008 ...... 155 TableTable 8.4:8.5: DistributionDistribution ofof DonorsDonors byby Age,Gender, 1997-2008…………………………..…157 1997-2008...... 160 TableTable 8.5:8.6: DistributionDistribution ofof DonorsDonors byby Gender,Ethnic Group, 1997-2008 1997-2008...... 160...... 162 TableTable 8.6:8.7: DistributionDistribution ofof DonorsDonors byby EthnicReligion, Group, 1997-2008 1997-2008...... 164...... 162 TableTable 8.7:8.8: DistributionDistribution ofof DonorsDonors byby Religion,Nationality, 1997-2008 1997-2008...... 164...... 166 TableTable 8.8:8.9: DistributionDistribution ofof DonorsDonors byby Nationality,State, 1997-2008...... 168 1997-2008...... 166 TableTable 8.9:8.10: Distribution Donor’s Pl ofedged Donors Status, by State,1997-2008 1997-2008...... 168...... 169 TableTable 8.10:8.11: Donor’sDistribution Pledged of Donors Status, by 1997-2008 Type, 1997-2008...... 169 ...... 171 TableTable 8.11:8.12: DistributionDistribution ofof DonorsDonors byby Type,Cause 1997-2008 of Death, 1997-2008………………..172 ...... 171 TableTable 8.12:8.13: DistributionDistribution ofof DOronorsgan Donorsby Cause by of Blood Death, Group, 1997-2008………………..172 1997-2008...... 174 TableTable 8.13:8.14a: Distribution Distribution of of Or Donorsgan Donors by Institution by Blood of Group, Origin, 1997-2008 1997-2008...... 174...... 176 TableTable 8.14a:8.14b: Distribution Distribution of of Donors Donors by by Institution Referral Site, of Origin, 1997-2008 1997-2008...... 177...... 176 TableTable 8.14b:8.14c: DistributionDistribution ofof DDonoronorss byby ReferralProcurement Site, Site,1997-2008 1997-2008...... 177...... 178 TableTable 8.14c:8.15: DistributionDistribution ofof DonorsDonors byby Inotrope,Procurement 2008 Site,...... 179 1997-2008 ...... 178 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179 List of Figures ListFigure of Figures8.1: Number of Donations by Year, 1997-2008...... 154 FigureFigure 8.1:8.3: NumberPotential of Donor Donations Referrals by Year, and Actual1997-2008 Donations...... 154 by month, 2008..……156 FigureFigure 8.3:8.4: PotentialDistribution Donor of DonorsReferrals by and Age, Actual 1997-2008...... 158 Donations by month, 2008..……156 FigureFigure 8.4:8.5: DistributionDistribution ofof DonorsDonors byby Age,Gender, 1997-2008...... 158 1997-2008 ...... 160 FigureFigure 8.5:8.6: DistributionDistribution ofof DonorsDonors byby Gender,Ethnic Group, 1997-2008 1997-2008...... 160...... 162 FigureFigure 8.6:8.7: DistributionDistribution ofof DonorsDonors byby EthnicReligion, Group, 1997-2008 1997-2008...... 164...... 162 FigureFigure 8.7:8.8: DistributionDistribution ofof DonorsDonors byby Religion,Nationality, 1997-2008 1997-2008...... 164...... 166 FigureFigure 8.8:8.10: Distribution Donor’s Pledged of Donors Status, by Nationality,1997-2008...... 169 1997-2008 ...... 166 FigureFigure 8.10:8.11: Donor’sDistribution Pledged of Donors Status, by 1997-2008...... 169 Type, 1997-2008...... 171 FigureFigure 8.11:8.13a: Distribution Distribution of of Donors Organ byDonors Type, by 1997-2008...... 171 Blood Group, 1997-2008 ...... 174 FigureFigure 8.13a:8.13b: Distribution Distribution of of Organ Organ Donors Donor byby BloodBlood GroupGroup, Type 1997-2008 (pie chart),...... 174 1997- Figure 8.13b: Distribution2008…………………………….…………………………………....176 of Organ Donor by Blood Group Type (pie chart), 1997- Figure 8.13c: 2008…………………………….…………………………………....176Distribution of Organ Donor by Blood Group Type (pie chart), Figure 8.13c: Distribution2008…………………………….……………………………….…...176 of Organ Donor by Blood Group Type (pie chart), Figure 8.14a: 2008…………………………….……………………………….…...176Distribution of Donors by Institution of Origin, 1997-2008 ...... 176 FigureFigure 8.14a:8.14b: Distribution Distribution of of Donors Donors by by Institution Referral Site, of Origin, 1997-2008 1997-2008...... 177...... 176 FigureFigure 8.14b:8.14c: DistributionDistribution ofof DDonorsonors byby ReferralProcurement Site, Site,1997-2008 1997-2008...... 177...... 178 Figure 8.14c: Distribution of Donors by Procurement Site, 1997-2008...... 178

152 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION CADAVERIC ORGAN AND TISSUE DONATION CADAVERIC ORGAN AND TISSUE DONATION There was an increase in the number of potential cadaveric donors referred to the NationalThere was Transplant an increase Procurement in the number Unit (NTPMU) of potential nationwide cadaveric from donors 73 referred the previous to the yearNational to 112 Transplant in 2008. The Procurement number of Unitactual (NTPMU) donors remained nationwide about from the 73same the at previous 26 for theyear year, to 112which in 2008.translated The tonumber a conversion of actual rate dono of 23%rs remained and a donation about the rate same of 0.94at 26 per for millionthe year, population which translated (Table to 8.1). a conversion Of these rate 13 (50%)of 23% were and a brain donation dead rate donors of 0.94 who per donatedmillion organs population and (Table tissues 8.1). which Of were these pr 13ocured (50%) in were the operating brain dead theatre, donors while who anotherdonated 13 organs were tissue and tissuesdonations which after were card iac procured death (Table in the 8.2, operating Table 8.11). theatre, In total while 87another organs 13 and were tissues tissue were donations procured, after comp cardrisingiac death 40 corneas, (Table 8.2,26 kidneys, Table 8.11). 4 livers, In total 13 pairs87 organs of heart and valves tissues and were 4 sets procured, of long bones.comprising 40 corneas, 26 kidneys, 4 livers, 13 pairs of heart valves and 4 sets of long bones. The number of donations throughout the year did not conform to any particular trend (TableThe number 8.3). There of donations were 4 paediatricthroughout donors the year (age did 1 not – 9conform years) andto any 4 teenage particular donors trend which(Table together 8.3). There constitute were 431% paediatric of the donors total number (age 1 of– 9 donors years) (Tableand 4 teenage 8.4). Another donors 23%which (6/26) together were constitutein their twenties 31% of whic the h total means number that 54% of donors of donors (Table were 8.4). under Another the age23% of (6/26) thirty. were The in mean their age twenties was 30.8 whic yearh meanss, age that range 54% 2 –of 71 donors years. were Male under donors the outnumberage of thirty. female The three mean to one age (Table was 30.8 8.5). year s, age range 2 – 71 years. Male donors outnumber female three to one (Table 8.5). Two thirds of donors were Chinese, 23% Indian and 12% others by ethnicity (Table 8.6),Two 62%thirds were of donors Buddhist were by Chin religionese, 23% (Table Indian 8.7). and Two 12% donors others were by non-Malaysianethnicity (Table (Table8.6), 62%8.8). wereMajority Buddhist of the bydonors religion came (Table from the 8.7). Federal Two donorsTerritory were of Kuala non-Malaysian Lumpur (31%)(Table followed 8.8). Majority by Johor, of th Selangore donors andcame Pera fromk (12% the Federal each) (TableTerritory 8.9). of OnlyKuala two Lumpur out of(31%) the 26 followed actual donors by Johor, (8%) Selangor had pledged and Perato donatek (12% before each) and (Table carried 8.9). the Only donor two card out (Tableof the 8.10).26 actual donors (8%) had pledged to donate before and carried the donor card (Table 8.10). Cardiac disease was the most common cause of death, accounting for 23% of the brainCardiac death disease and 54% was of the the most cardiac common death. cau Anotherse of death, 23% accountingof brain dead for donors 23% of and the 15%brain of death post-cardiac and 54% death of the tis cardiacsue donors deat h. died Another from motor 23% vehicleof brain accidentsdead donors (Table and 8.12).15% In of 2008, post-cardiac the most death common tissue blood donors group died among from the motor 13 organ vehicle donors accidents was group (Table O8.12). rhesus In positive2008, the (46%), most common followed blood by A group positive among (31%), the 13 B positiveorgan donors (15%), was only group 1 (8%)O rhesus from positive group A (46%), negative followed and no by AB A gr positiveoup (Table (31%), 8.13). B positive When considered (15%), only in 1 totality(8%) fromsince group1997, Ablood negative group andO positive no AB remained group (Table the most 8.13). common When group considered (40%) in followedtotality sinceby B positive1997, blood and Agroup positive. O positive remained the most common group (40%) followed by B positive and A positive. Most of the donations (58%) took place in Ministry of Health hospitals with 6 (23%) fromMost private of the hospitalsdonations and (58%) 3 (12%) took fromplace Univ in Ministryersity hospitals of Health (Table hospitals 8.14a). with Sixty-five 6 (23%) percentfrom private of the hospitalsdonors were and found3 (12%) in fromthe ICU, Univ butersity there hospitals were also (Table four 8.14a). direct Sixty-fivereferrals forpercent tissue of donationthe donors from were the found mortuary in the ICU, with but three there from were the also ward four and direct one referrals from emergencyfor tissue department donation from (“brought the mortuaryin dead” BID) with (Table three 8.14b). from the ward and one from emergency department (“brought in dead” BID) (Table 8.14b). Organ donors were sent to the operating theatre for procurement of organs (13/13) whileOrgan tissues donors were were mainly sent to procured the operating in the theatre mortuary for (12/13) procurement (Table of 8.14c). organs For (13/13) the organwhile donors tissues all were were mainly on inotropic procured support in the before mortuary procurement (12/13) (Tablewith the 8.14c). commonest For the combinationorgan donors being all weredopamine on inotropic and noradrenaline support before (6/13) procurement (Table 8.15). with the commonest combination being dopamine and noradrenaline (6/13) (Table 8.15).

153 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Table 8.1: Number of Donations by Year, 1997-2008 List of Tables Number of procurement by year Table 8.1: Number of Donations by Year,N=213 1997-2008 ...... 154 TableYear 8.2: Number1997 of organs 1998 procured,1999 2000 1997-20082001 2002...... 1552003 2004 2005 2006 2007 2008 Number of 5 7 4 13 24 30 25 16 13 25 25 26 Tabledonors 8.3: Potential Donor Referrals and Actual Donations by month, 2008 ...... 155 TableRate of8.4: Distribution of Donors by Age, 1997-2008…………………………..…157 Tableprocurement 8.5: Distribution (per of Donors by Gender, 1997-2008...... 160 0.23 0.32 0.18 0.55 1.00 1.22 1.00 0.63 0.50 0.94 0.92 0.94 Tablemillion 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Tablepopulation) 8.7: Distribution of Donors by Religion, 1997-2008...... 164 Table 8.8: Distribution of Donors by Nationality, 1997-2008...... 166 TableFigure 8.9: 8.1: Distribution Number of ofDonations Donors byby State,Year, 1997-2008...... 1681997-2008 Table 8.10: Donor’s Pledged Status, 1997-2008 ...... 169 Table30 8.11: Distribution of Donors by Type, 1997-2008 ...... 171 Table 8.12: Distribution of Donors by Cause of Death, 1997-2008………………..172 Table 8.13: Distribution of Organ Donors by Blood Group, 1997-2008...... 174 Table 8.14a: Distribution of Donors by Institution of Origin, 1997-2008...... 176 Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 ...... 177 Table 8.14c: Distribution of Donors by Procurement Site, 1997-2008 ...... 178 20 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179

List of Figures Figure 8.1: Number of Donations by Year, 1997-2008...... 154 umber of donors (n) of donors umber

FigureN 8.3: Potential Donor Referrals and Actual Donations by month, 2008..……156 Figure10 8.4: Distribution of Donors by Age, 1997-2008...... 158 Figure 8.5: Distribution of Donors by Gender, 1997-2008 ...... 160 Figure 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Figure 8.7: Distribution of Donors by Religion, 1997-2008 ...... 164 Figure 8.8: Distribution of Donors by Nationality, 1997-2008 ...... 166 Figure 8.10: Donor’s Pledged Status, 1997-2008...... 169 0 Figure 8.11:1997 Distribution 1998 1999 of Donors2000 2001 by Type, 2002 1997-2008...... 171 2003 2004 2005 2006 2007 2008 Figure 8.13a: Distribution of Organ DonorsYear by Blood Group, 1997-2008 ...... 174 Figure 8.13b: Distribution of Organ Donor by Blood Group Type (pie chart), 1997- 2008…………………………….…………………………………....176 Figure 8.13c: Distribution of Organ Donor by Blood Group Type (pie chart), 2008…………………………….……………………………….…...176 Figure 8.14a: Distribution of Donors by Institution of Origin, 1997-2008 ...... 176 Figure 8.14b: Distribution of Donors by Referral Site, 1997-2008...... 177 Figure 8.14c: Distribution of Donors by Procurement Site, 1997-2008...... 178

154 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION Table 8.2: Number of organs procured, 1997-2008 OrgansCADAVERIC ORGAN AND NumberTISSUE of DONATIONprocurement by year N=213 procured There was an1997 increase1998 in1999 the number2000 2001 of potential2002 2003 cadaveric2004 2005 donors2006 referred 2007 2008 to the Cornea 4 10 6 18 32 48 40 20 22 38 32 40 HeartNational Transplant1 Procurement3 2 3 Unit4 (NTPMU)0 2 nationwide 0 1 from 1 73 the3 previous0 Liveryear to 112 in 2008.0 The0 number2 2 of actual1 dono2 rs 1remained 3 about3 the6 same5 at 264 for Kidneythe year, which8 translated 10 to6 a conversion22 38 rate26 of 23%16 and18 a donation8 26 rate 28of 0.9426 per Heartmillion valve population 0 (Table1 2 8.1). 8 Of these10 1310 (50%)10 were10 brain6 dead15 donors8 13 who Bonedonated organs0 and 1 tissues 0 which3 were2 pr6ocured 4 in the5 operating2 5 theatre,5 while4 Skinanother 13 were0 tissue0 donations0 2 after 2card iac2 death0 (Table1 8.2,0 Table3 8.11).0 In 0total Lung87 organs and tissues0 0 were 0procured, 0 comp0 rising0 400 corneas,0 261 kidneys,1 42 livers,0 13 pairs of heart valves and 4 sets of long bones. Table 8.3: Potential Donor Referrals and Actual Donations by month, 2008 The number of donations throughout theNo. year of donorsdid not conform to any particular trend (Table 8.3). There were 4 paediatric donors (ageActual 1 – 9 Donors years) and 4 teenage donors Month Potential Donor which togetherReferrals constitute 31% Brain of the Death total numberCardiac of donorsDeath (Table 8.4). Another Total 23% (6/26) were in their twentiesOrgan Donors which (BD) meansTissue that Donors54% of (CD) donors were under the ageJan of thirty. The10 mean age was 30.81 years, age range0 2 – 71 years. Male1 donors outnumberFeb female10 three to one (Table1 8.5). 3 4 Mar 14 3 0 3 Two thirds of donors were Chinese, 23% Indian and 12% others by ethnicity (Table Apr 9 0 1 1 8.6), 62% were Buddhist by religion (Table 8.7). Two donors were non-Malaysian May 6 1 0 1 (Table 8.8). Majority of the donors came from the Federal Territory of Kuala Lumpur 17 3 3 6 (31%)Jun followed by Johor, Selangor and Perak (12% each) (Table 8.9). Only two out ofJul the 26 actual donors11 (8%) had pledged0 to donate before2 and carried the 2donor card (TableAug 8.10). 9 2 0 2 Sep 8 0 1 1 CardiacOct disease 5 was the most common0 cause of death,0 accounting for 23%0 of the brainNov death and 54%3 of the cardiac 1deat h. Another 23%1 of brain dead donors2 and 15%Dec of post-cardiac9 death tissue donors1 died from motor2 vehicle accidents3 (Table TOTAL8.12). In 2008, the112 most common blood13 group among the13 13 organ donors26 was group O rhesus positive (46%), followed by A positive (31%), B positive (15%), only 1 (8%) from group A negative and no AB group (Table 8.13). When considered in totality since 1997, blood group O positive remained the most common group (40%) followed by B positive and A positive.

Most of the donations (58%) took place in Ministry of Health hospitals with 6 (23%) from private hospitals and 3 (12%) from University hospitals (Table 8.14a). Sixty-five percent of the donors were found in the ICU, but there were also four direct referrals for tissue donation from the mortuary with three from the ward and one from emergency department (“brought in dead” BID) (Table 8.14b).

Organ donors were sent to the operating theatre for procurement of organs (13/13) while tissues were mainly procured in the mortuary (12/13) (Table 8.14c). For the organ donors all were on inotropic support before procurement with the commonest combination being dopamine and noradrenaline (6/13) (Table 8.15).

155 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Figure 8.3: Potential Donor Referrals and Actual Donations by month, 2008 List of Tables Table 8.1: Number of Donations by Year, 1997-2008 ...... 154 Table 8.2: Number of organs procured, 1997-2008...... 155 Table 8.3: Potential Donor Referrals and Actual Donations by month, 2008 ...... 155 Table 8.4: Distribution of Donors by Age, 1997-2008…………………………..…157 Table 8.5: Distribution of Donors by Gender, 1997-2008...... 160 Table 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Table 8.7: Distribution of Donors by Religion, 1997-2008...... 164 Table 8.8: Distribution of Donors by Nationality, 1997-2008...... 166 Table 8.9: Distribution of Donors by State, 1997-2008...... 168 Table 8.10: Donor’s Pledged Status, 1997-2008 ...... 169 Table 8.11: Distribution of Donors by Type, 1997-2008 ...... 171 Table 8.12: Distribution of Donors by Cause of Death, 1997-2008………………..172 Table 8.13: Distribution of Organ Donors by Blood Group, 1997-2008...... 174 Table 8.14a: Distribution of Donors by Institution of Origin, 1997-2008...... 176 Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 ...... 177 Table 8.14c: Distribution of Donors by Procurement Site, 1997-2008 ...... 178 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179

List of Figures Figure 8.1: Number of Donations by Year, 1997-2008...... 154 Figure 8.3: Potential Donor Referrals and Actual Donations by month, 2008..……156 Figure 8.4: Distribution of Donors by Age, 1997-2008...... 158 Figure 8.5: Distribution of Donors by Gender, 1997-2008 ...... 160 Figure 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Figure 8.7: Distribution of Donors by Religion, 1997-2008 ...... 164 Figure 8.8: Distribution of Donors by Nationality, 1997-2008 ...... 166 Figure 8.10: Donor’s Pledged Status, 1997-2008...... 169 Figure 8.11: Distribution of Donors by Type, 1997-2008...... 171 Figure 8.13a: Distribution of Organ Donors by Blood Group, 1997-2008 ...... 174 Figure 8.13b: Distribution of Organ Donor by Blood Group Type (pie chart), 1997- 2008…………………………….…………………………………....176 Figure 8.13c: Distribution of Organ Donor by Blood Group Type (pie chart), 2008…………………………….……………………………….…...176 Figure 8.14a: Distribution of Donors by Institution of Origin, 1997-2008 ...... 176 Figure 8.14b: Distribution of Donors by Referral Site, 1997-2008...... 177 Figure 8.14c: Distribution of Donors by Procurement Site, 1997-2008...... 178

156 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION

CADAVERIC ORGAN AND TISSUE DONATION

There was an increase in the number of potential cadaveric donors referred to the National Transplant Procurement Unit (NTPMU) nationwide from 73 the previous year to 112 in 2008. The number of actual donors remained about the same at 26 for the year, which translated to a conversion rate of 23% and a donation rate of 0.94 per million population (Table 8.1). Of these 13 (50%) were brain dead donors who donated organs and tissues which were procured in the operating theatre, while another 13 were tissue donations after cardiac death (Table 8.2, Table 8.11). In total 87 organs and tissues were procured, comprising 40 corneas, 26 kidneys, 4 livers, 13 pairs of heart valves and 4 sets of long bones.

Two thirds of donors were Chinese, 23% Indian and 12% others by ethnicity (Table 8.6), 62% were Buddhist by religion (Table 8.7). Two donors were non-Malaysian (Table 8.8). Majority of the donors came from the Federal Territory of Kuala Lumpur (31%) followed by Johor, Selangor and Perak (12% each) (Table 8.9). Only two out of the 26 actual donors (8%) had pledged to donate before and carried the donor card (Table 8.10).

Cardiac disease was the most common cause of death, accounting for 23% of the brain death and 54% of the cardiac death. Another 23% of brain dead donors and 15% of post-cardiac death tissue donors died from motor vehicle accidents (Table 8.12). In 2008, the most common blood group among the 13 organ donors was group O rhesus positive (46%), followed by A positive (31%), B positive (15%), only 1 (8%) from group A negative and no AB group (Table 8.13). When considered in totality since 1997, blood group O positive remained the most common group (40%) followed by B positive and A positive.

157 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Figure 8.4: Distribution of Donors by Age, 1997-2008 List of Tables Table 8.1: Number of Donations by Year, 1997-2008 ...... 154 Age 0-<10 years Age 10-<20 years Age 20-<30 years Table 8.2: Number of organs procured, 1997-2008...... 155 Table 8.3: Potential DonorAge 30-<40 Referrals years and Actual Age 40-<50Donations years by month, Age 2008 50...... 155 years Table35 8.4: Distribution of Donors by Age, 1997-2008…………………………..…157 Table 8.5: Distribution of Donors by Gender, 1997-2008...... 160 Table30 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Table 8.7: Distribution of Donors by Religion, 1997-2008...... 164 Table25 8.8: Distribution of Donors by Nationality, 1997-2008...... 166 Table 8.9: Distribution of Donors by State, 1997-2008...... 168 Table20 8.10: Donor’s Pledged Status, 1997-2008 ...... 169 Table 8.11: Distribution of Donors by Type, 1997-2008 ...... 171 Table15 8.12: Distribution of Donors by Cause of Death, 1997-2008………………..172 umber of donors (n) of donors umber

TableN 8.13: Distribution of Organ Donors by Blood Group, 1997-2008...... 174 Table10 8.14a: Distribution of Donors by Institution of Origin, 1997-2008...... 176 Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 ...... 177 Table 8.14c:5 Distribution of Donors by Procurement Site, 1997-2008 ...... 178 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179 0 List of Figures1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 Figure 8.1: Number of Donations by Year, 1997-2008Year ...... 154 Figure 8.3: Potential Donor Referrals and Actual Donations by month, 2008..……156 Figure 8.4: Distribution of Donors by Age, 1997-2008...... 158 Figure 8.5: Distribution of Donors by Gender, 1997-2008 ...... 160 Figure 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Figure 8.7: Distribution of Donors by Religion, 1997-2008 ...... 164 Figure 8.8: Distribution of Donors by Nationality, 1997-2008 ...... 166 Figure 8.10: Donor’s Pledged Status, 1997-2008...... 169 Figure 8.11: Distribution of Donors by Type, 1997-2008...... 171 Figure 8.13a: Distribution of Organ Donors by Blood Group, 1997-2008 ...... 174 Figure 8.13b: Distribution of Organ Donor by Blood Group Type (pie chart), 1997- 2008…………………………….…………………………………....176 Figure 8.13c: Distribution of Organ Donor by Blood Group Type (pie chart), 2008…………………………….……………………………….…...176 Figure 8.14a: Distribution of Donors by Institution of Origin, 1997-2008 ...... 176 Figure 8.14b: Distribution of Donors by Referral Site, 1997-2008...... 177 Figure 8.14c: Distribution of Donors by Procurement Site, 1997-2008...... 178

158 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION

CADAVERIC ORGAN AND TISSUE DONATION Donor's Age Group (year) in 2008

There6 was an increase in the number of potential cadaveric donors referred to the National Transplant Procurement Unit (NTPMU) nationwide from 73 the previous year to 112 in 2008. The number of actual donors remained about the same at 26 for the year, which translated to a conversion rate of 23% and a donation rate of 0.94 per million population (Table 8.1). Of these 13 (50%) were brain dead donors who donated4 organs and tissues which were procured in the operating theatre, while another 13 were tissue donations after cardiac death (Table 8.2, Table 8.11). In total 87 organs and tissues were procured, comprising 40 corneas, 26 kidneys, 4 livers, 13 pairs of heart valves and 4 sets of long bones.

The(n) donors of Number 2number of donations throughout the year did not conform to any particular trend (Table 8.3). There were 4 paediatric donors (age 1 – 9 years) and 4 teenage donors which together constitute 31% of the total number of donors (Table 8.4). Another 23% (6/26) were in their twenties which means that 54% of donors were under the age of thirty. The mean age was 30.8 years, age range 2 – 71 years. Male donors outnumber0 female three to one (Table 8.5). 0-<10 10-<20 20-<30 30-<40 40-<50 50 Donor's Age Group (Years) Two thirds of donors were Chinese, 23% Indian and 12% others by ethnicity (Table 8.6), 62% were Buddhist by religion (Table 8.7). Two donors were non-Malaysian (Table 8.8). Majority of the donors came from the Federal Territory of Kuala Lumpur (31%) followed by Johor, Selangor and Perak (12% each) (Table 8.9). Only two out of the 26 actual donors (8%) had pledged to donate before and carried the donor card (Table 8.10).

159 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Table 8.5: Distribution of Donors by Gender, 1997-2008 No. (%) ListDonor’s of Tables 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 Total Tablegender 8.1: Number of Donations by Year, 1997-2008 ...... 154 Table 8.2:N=5 NumberN=7 ofN=4 organsN=13 procured, N=24 N=301997-2008N=25 ...... 155N=16 N=13 N=25 N=25 N=26 N=213 3 7 3 11 20 27 21 12 8 19 20 18 169 Male Table 8.3:(60) Potential (100) Donor(75) (85)Referrals (83) and(90) Actual (84) Donations (75) (62) by month,(76) 2008(80) ...... 155(69) (79) Table 8.4: Distribution2 0 1 of Donors2 by4 Age,3 1997-2008…………………………..…1574 4 5 6 5 8 44 Female Table 8.5:(40) Distribution (0) (25) of Donors(15) (17)by Gender,(10) 1997-2008(16) (25) ...... 160(38) (24) (20) (31) (21) Table 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Table 8.7: Distribution of Donors by Religion, 1997-2008...... 164 TableFigure 8.8: 8.5: Distribution Distribution of of Donors Donors by by Nationality, Gender, 1997-2008 1997-2008 ...... 166 Table 8.9: Distribution of Donors by State, 1997-2008...... 168 Table 8.10: Donor’s Pledged Status, 1997-2008 ...... 169 Table 8.11: Distribution of Donors by Type, 1997-2008 ...... 171 Table 8.12: Distribution of Donors by Cause of Death, 1997-2008………………..172 Table 8.13: Distribution of Organ Donors by Blood Group, 1997-2008...... 174 Table 8.14a: Distribution of Donors by Institution of Origin, 1997-2008...... 176 Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 ...... 177 Table 8.14c: Distribution of Donors by Procurement Site, 1997-2008 ...... 178 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179

160 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION

CADAVERIC ORGAN AND TISSUE DONATION Male Female

There35 was an increase in the number of potential cadaveric donors referred to the National Transplant Procurement Unit (NTPMU) nationwide from 73 the previous year30 to 112 in 2008. The number of actual donors remained about the same at 26 for the year, which translated to a conversion rate of 23% and a donation rate of 0.94 per million population (Table 8.1). Of these 13 (50%) were brain dead donors who 25 donated organs and tissues which were procured in the operating theatre, while another 13 were tissue donations after cardiac death (Table 8.2, Table 8.11). In total 20 87 organs and tissues were procured, comprising 40 corneas, 26 kidneys, 4 livers, 13 pairs of heart valves and 4 sets of long bones. (n) of donors umber 15 N The number of donations throughout the year did not conform to any particular trend (Table10 8.3). There were 4 paediatric donors (age 1 – 9 years) and 4 teenage donors which together constitute 31% of the total number of donors (Table 8.4). Another 23% 5(6/26) were in their twenties which means that 54% of donors were under the age of thirty. The mean age was 30.8 years, age range 2 – 71 years. Male donors outnumber0 female three to one (Table 8.5). 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 Two thirds of donors were Chinese, 23% YearIndian and 12% others by ethnicity (Table 8.6), 62% were Buddhist by religion (Table 8.7). Two donors were non-Malaysian (Table 8.8). Majority of the donors came from the Federal Territory of Kuala Lumpur (31%) followed by Johor, Selangor and Perak (12% each) (Table 8.9). Only two out of the 26 actual donors (8%) had pledged to donate before and carried the donor card (Table 8.10).

161 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Table 8.6: Distribution of Donors by Ethnic Group, 1997-2008 No. (%) ListDonor’s of Tables ethnic Tablegroup 8.1: Number 1997of Donations 1998 by Year,1999 1997-2008 2000...... 154 2001 2002 2003 Table 8.2: Number ofN=5 organs procured,N=7 1997-2008N=4 N=13...... 155 N=24 N=30 N=25 TableMalay 8.3: Potential1 Donor(20) Referrals0 (0) and0 Actual(0) Donations2 (15) by1 (4) month, 02008 (0) ...... 1550 (0) TableChinese 8.4: Distribution3 (60) of Donors4 (57) by Age,4 (100) 1997-2008…………………………..…157 7 (54) 17 (71) 13 (43) 14 (56) TableIndian 8.5: Distribution1 (20) of Donors3 (43) by Gender,0 (0) 1997-20083 (23) ...... 1604 (17) 15 (50) 9 (36) TableOthers 8.6: Distribution0 (0) of Donors0 (0) by Ethnic0 (0) Group,1 (8) 1997-2008 2 (8)...... 162 2 (7) 2 (8) Table 8.7: Distribution of Donors by Religion, 1997-2008...... 164 No. (%) TableDonor’s 8.8: ethnic Distribution of Donors by Nationality, 1997-2008...... 166 2004 2005 2006 2007 208 Total group Table 8.9: DistributionN=16 of DonorsN=13 by State, N=251997-2008...... 168 N=25 N=28 N=213 TableMalay 8.10: Donor’s 1Pl (6)edged Status,1 (8) 1997-20081 (4) ...... 1695 (20) 0 (0) 12 (6) TableChinese 8.11: Distribution14 (88) of Donors5 (38) by Type,12 1997-2008(48) 14 ...... 171 (56) 17 (65) 124 (58) TableIndian 8.12: Distribution1 (6) of Donors7 (54) by Cause11 of(44) Death, 31997-2008………………..172 (12) 6 (23) 63 (30) TableOthers 8.13: Distribution0 (0) of Organ0 (0) Donors by1 (4)Blood Group,3 (12) 1997-2008 3 (12)...... 174 14 (7) Table 8.14a: Distribution of Donors by Institution of Origin, 1997-2008...... 176 Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 ...... 177 TableFigure 8.14c: 8.6: Distribution Distribution of of Donors Donors by by Ethnic Procurement Group, Site,1997-2008 1997-2008 ...... 178 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179

162 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION

CADAVERIC ORGAN AND TISSUE DONATION Malay Chinese Indian Others There35 was an increase in the number of potential cadaveric donors referred to the National Transplant Procurement Unit (NTPMU) nationwide from 73 the previous year to 112 in 2008. The number of actual donors remained about the same at 26 for the year,30 which translated to a conversion rate of 23% and a donation rate of 0.94 per million population (Table 8.1). Of these 13 (50%) were brain dead donors who donated25 organs and tissues which were procured in the operating theatre, while another 13 were tissue donations after cardiac death (Table 8.2, Table 8.11). In total 87 organs20 and tissues were procured, comprising 40 corneas, 26 kidneys, 4 livers, 13 pairs of heart valves and 4 sets of long bones. 15 umber of donors (n) of donors umber

TheN number of donations throughout the year did not conform to any particular trend (Table 8.3). There were 4 paediatric donors (age 1 – 9 years) and 4 teenage donors which10 together constitute 31% of the total number of donors (Table 8.4). Another 23% (6/26) were in their twenties which means that 54% of donors were under the age of5 thirty. The mean age was 30.8 years, age range 2 – 71 years. Male donors outnumber female three to one (Table 8.5). 0 Two thirds1997 of donors 1998 1999were 2000Chin 2001ese, 23% 2002 Indian 2003 2004and 12% 2005 ot 2006hers 2007by ethnicity 2008 (Table 8.6), 62% were Buddhist by religion (TableYear 8.7). Two donors were non-Malaysian (Table 8.8). Majority of the donors came from the Federal Territory of Kuala Lumpur (31%) followed by Johor, Selangor and Perak (12% each) (Table 8.9). Only two out of the 26 actual donors (8%) had pledged to donate before and carried the donor card (Table 8.10).

163 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Table 8.7: Distribution of Donors by Religion, 1997-2008 No. (%) ListDonor’s of Tables Tablereligion 8.1: Number1997 of Donations1998 by Year,1999 1997-20082000 ...... 1542001 2002 2003 Table 8.2: NumberN=5 of organsN=7 procured,N=4 1997-2008N=13...... 155 N=24 N=30 N=25 TableIslam 8.3: Potential1 (20) Donor Referrals0 (0) and0 (0) Actual 2 Donations (15) 1 by (4) month, 0 2008 (0) ...... 1551 (4) Buddhism 3 (60) 3 (43) 0 (0) 0 (0) 1 (4) 5 (17) 15 (60) TableHinduism 8.4: Distribution1 (20) of Donors3 (43) by Age,0 (0) 1997-2008…………………………..…1573 (23) 3 (13) 13 (43) 8 (32) TableChristianity 8.5: Distribution 0 (0) of Donors0 (0) by Gender,0 (0) 1997-20081 (8) ...... 1600 (0) 1 (3) 1 (4) TableOthers 8.6: Distribution0 (0) of Donors0 (0) by Ethnic0 (0) Group,0 (0) 1997-2008 0 (0) ...... 1620 (0) 0 (0) TableUnknown 8.7: Distribution0 (0) of Donors1 (14) by 4Religion, (100) 1997-20087 (54) 19...... 164 (79) 11 (37) 0 (0) Table 8.8: Distribution of Donors by Nationality, 1997-2008...... 166 No. (%) TableDonor’s 8.9: Distribution of Donors by State, 1997-2008...... 168 2004 2005 2006 2007 2008 Total Tablereligion 8.10: Donor’s Pledged Status, 1997-2008 ...... 169 Table 8.11: DistributionN=16 of DonorsN=13 by Type,N=25 1997-2008 N=25 ...... 171 N=26 N=213 Islam 2 (13) 1 (8) 2 (8) 5 (20) 0 (0) 15 (7) TableBuddhism 8.12: Distribution14 (88) of Donors5 (38) by Cause12 (48) of Death,13 1997-2008………………..172 (52) 16 (62) 87 (41) TableHinduism 8.13: Distribution0 (0) of Or5gan (38) Donors 10 by (40) Blood Group,2 (8) 1997-20086 (23)...... 174 54 (25) TableChristianity 8.14a: Distribution0 (0) of Donors0 (0) by Institution0 (0) of Origin,4 (16) 1997-20083 (12) ...... 17610 (5) TableOthers 8.14b: Distribution0 (0) of D2onors (15) by Referral0 (0) Site, 1997-20081 (4) ...... 1770 (0) 3 (1) TableUnknown 8.14c: Distribution0 (0) of Donor0 (0) s by Procurement1 (4) Site,0 (0) 1997-2008 1 (4)...... 178 44 (21) Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179

ListFigure of Figures8.7: Distribution of Donors by Religion, 1997-2008 Figure 8.1: Number of Donations by Year, 1997-2008...... 154 Figure 8.3: Potential Donor Referrals and Actual Donations by month, 2008..……156 Figure 8.4: Distribution of Donors by Age, 1997-2008...... 158 Figure 8.5: Distribution of Donors by Gender, 1997-2008 ...... 160 Figure 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Figure 8.7: Distribution of Donors by Religion, 1997-2008 ...... 164 Figure 8.8: Distribution of Donors by Nationality, 1997-2008 ...... 166 Figure 8.10: Donor’s Pledged Status, 1997-2008...... 169 Figure 8.11: Distribution of Donors by Type, 1997-2008...... 171 Figure 8.13a: Distribution of Organ Donors by Blood Group, 1997-2008 ...... 174 Figure 8.13b: Distribution of Organ Donor by Blood Group Type (pie chart), 1997- 2008…………………………….…………………………………....176 Figure 8.13c: Distribution of Organ Donor by Blood Group Type (pie chart), 2008…………………………….……………………………….…...176 Figure 8.14a: Distribution of Donors by Institution of Origin, 1997-2008 ...... 176 Figure 8.14b: Distribution of Donors by Referral Site, 1997-2008...... 177 Figure 8.14c: Distribution of Donors by Procurement Site, 1997-2008...... 178

164 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION

CADAVERIC ORGAN AND TISSUE DONATION Islam Buddhism Hinduism

There was an increaseChristianity in the number of Otherspotential cadaveric donorsUnknown referred to the National35 Transplant Procurement Unit (NTPMU) nationwide from 73 the previous year to 112 in 2008. The number of actual donors remained about the same at 26 for the year,30 which translated to a conversion rate of 23% and a donation rate of 0.94 per million population (Table 8.1). Of these 13 (50%) were brain dead donors who donated organs and tissues which were procured in the operating theatre, while 25 another 13 were tissue donations after cardiac death (Table 8.2, Table 8.11). In total 87 organs and tissues were procured, comprising 40 corneas, 26 kidneys, 4 livers, 13 pairs20 of heart valves and 4 sets of long bones.

15 The (n) of donors umber number of donations throughout the year did not conform to any particular trend (TableN 8.3). There were 4 paediatric donors (age 1 – 9 years) and 4 teenage donors which10 together constitute 31% of the total number of donors (Table 8.4). Another 23% (6/26) were in their twenties which means that 54% of donors were under the age of5 thirty. The mean age was 30.8 years, age range 2 – 71 years. Male donors outnumber female three to one (Table 8.5). 0 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 Two thirds of donors were Chinese, 23% Indian and 12% others by ethnicity (Table Year 8.6), 62% were Buddhist by religion (Table 8.7). Two donors were non-Malaysian (Table 8.8). Majority of the donors came from the Federal Territory of Kuala Lumpur (31%) followed by Johor, Selangor and Perak (12% each) (Table 8.9). Only two out of the 26 actual donors (8%) had pledged to donate before and carried the donor card (Table 8.10).

165 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Table 8.8: Distribution of Donors by Nationality, 1997-2008 No. (%) ListDonor’s of Tables Tablenationality 8.1: Number1997 1998 of Donations1999 2000 by Year,2001 1997-20082002 2003 ...... 1542004 2005 2006 2007 2008 Total Table 8.2: NumberN=5 N=7 of organsN=4 procured,N=13 N=24 1997-2008N=30 N=25...... 155N=16 N=13 N=25 N=25 N=26 N=213 5 7 4 13 21 29 24 16 13 24 24 24 204 TableMalaysian 8.3: Potential Donor Referrals and Actual Donations by month, 2008 ...... 155 (100) (100) (100) (100) (88) (97) (96) (100) (100) (96) (96) (92) (96) TableNon- 8.4: Distribution0 0 of0 Donors 0 by Age,3 1997-2008…………………………..…1571 1 0 0 1 1 2 9 TableMalaysian 8.5: Distribution(0) (0) of(0) Donors (0) by (13)Gender, (3) 1997-2008 (4) (0)...... 160 (0) (4) (4) (8) (4) Table 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Table 8.7: Distribution of Donors by Religion, 1997-2008...... 164 TableFigure 8.8: 8.8: Distribution Distribution of of Donors Donors by by Nationality, Nationality, 1997-2008 1997-2008...... 166 Table 8.9: Distribution of Donors by State, 1997-2008...... 168 Table 8.10: Donor’s Pledged Status, 1997-2008 ...... 169 Table 8.11: Distribution of Donors by Type, 1997-2008 ...... 171 Table 8.12: Distribution of Donors by Cause of Death, 1997-2008………………..172 Table 8.13: Distribution of Organ Donors by Blood Group, 1997-2008...... 174 Table 8.14a: Distribution of Donors by Institution of Origin, 1997-2008...... 176 Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 ...... 177 Table 8.14c: Distribution of Donors by Procurement Site, 1997-2008 ...... 178 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179

166 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION

CADAVERIC ORGAN AND TISSUE DONATION Malaysian Non-Malaysian There35 was an increase in the number of potential cadaveric donors referred to the National Transplant Procurement Unit (NTPMU) nationwide from 73 the previous year to 112 in 2008. The number of actual donors remained about the same at 26 for the year,30 which translated to a conversion rate of 23% and a donation rate of 0.94 per million population (Table 8.1). Of these 13 (50%) were brain dead donors who donated25 organs and tissues which were procured in the operating theatre, while another 13 were tissue donations after cardiac death (Table 8.2, Table 8.11). In total 87 organs and tissues were procured, comprising 40 corneas, 26 kidneys, 4 livers, 13 pairs20 of heart valves and 4 sets of long bones.

The 15number of donations throughout the year did not conform to any particular trend umber of donors (n) of donors umber

(TableN 8.3). There were 4 paediatric donors (age 1 – 9 years) and 4 teenage donors which together constitute 31% of the total number of donors (Table 8.4). Another 10 23% (6/26) were in their twenties which means that 54% of donors were under the age of thirty. The mean age was 30.8 years, age range 2 – 71 years. Male donors outnumber5 female three to one (Table 8.5).

Two thirds0 of donors were Chinese, 23% Indian and 12% others by ethnicity (Table 8.6), 62% 1997 were 1998 Buddhist 1999 by 2000 religion 2001 2002 (Table 2003 8.7). 2004 Two 2005 donors 2006 were 2007 non-Malaysian 2008 (Table 8.8). Majority of the donors came from the Federal Territory of Kuala Lumpur

(31%) followed by Johor, Selangor and Perak (12% each) (Table 8.9). Only two out of the 26 actual donors (8%) had pledged to donate before and carried the donor card (Table 8.10).

167 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Table 8.9: Distribution of Donors by State, 1997-2008 List of Tables No. (%) Donor’s state of Tableresidence* 8.1: Number of 1997Donations 1998 by Year,1999 1997-2008 2000...... 154 2001 2002 2003 Table 8.2: Number of N=5organs procured,N=7 1997-2008N=4 ...... 155N=13 N=24 N=30 N=25 TableJohor 8.3: Potential Donor0 Referrals0 and Actual0 Donations3 (23) by 0month, 20082 (7) ...... 1553 (12) TableMalacca 8.4: Distribution of0 Donors1 (14) by Age,1 (21997-2008…………………………..…1575) 0 0 1 (3) 2 (8) TableNegeri 8.5: Sembilan Distribution of0 Donors1 (14) by Gender,0 1997-20081 (8) ...... 1600 1 (3) 4 (16) TableSelangor 8.6: Distribution2 (40)of Donors 1 (14) by Ethnic0 Group, 1997-20080 3 (13)...... 162 9 (30) 6 (24) TableWP Kuala 8.7: LumpurDistribution 1 (20)of Donors 1 (14) by Religion,2 (50) 1997-20080 ...... 1640 5 (17) 2 (8) TableWP Putrajaya 8.8: Distribution of0 Donors0 by Nationality,0 1997-20080 ...... 1660 1 (3) 0 TablePerak 8.9: Distribution1 (20)of Donors 2 (29) by State,1 (25) 1997-2008...... 168 3 (23) 0 4 (13) 0 TableKedah 8.10: Donor’s Pledged0 Status,0 1997-20080 ...... 1692 (15) 3 (13) 1 (3) 0 TablePerlis 8.11: Distribution0 of Donors0 by Type,0 1997-20080 ...... 1710 0 0 TablePulau 8.12:Pinang Distribution 0 of Donors0 by Cause0 of Death,1 (8) 1997-2008………………..1723 (13) 1 (3) 3 (12) TablePahang 8.13: Distribution0 of Organ1 (14) Donors by0 Blood Group,0 1997-20083 (13) ...... 1742 (7) 2 (8) TableTerengganu 8.14a: Distribution0 of Donors0 by Institution0 of 0Origin, 11997-2008 (4) ...... 1760 0 TableKelantan 8.14b: Distribution0 of Donors0 by Referral0 Site,1 (8) 1997-2008 0 ...... 1770 0 TableSabah 8.14c: Distribution0 of Donor0 s by Procurement0 2 (15) Site, 1997-20081 (4) ...... 1780 1 (4) TableSarawak 8.15: Distribution0 of Donors0 by Inotrope,0 20080 ...... 1790 0 0

Others** 0 0 0 0 0 0 1 (4) List of Figures Unknown 1 (20) 0 0 0 10 (42) 3 (10) 1 (4) Figure 8.1: Number of Donations by Year, 1997-2008...... 154

Figure 8.3: Potential Donor Referrals and Actual Donations by month, 2008..……156 No. (%) FigureDonor’s 8.4: state Distribution of of Donors by Age, 1997-2008...... 158 residence* 2004 2005 2006 2007 2008 Total Figure 8.5: DistributionN=16 of Donors N=13 by Gender, N=25 1997-2008 N=25...... 160 N=26 N=213 FigureJohor 8.6: Distribution1 of(6) Donors1 by (8) Ethnic Group,1 (4) 1997-20085 (20) ...... 1623 (12) 19 (9) FigureMalacca 8.7: Distribution of0 Donors1 by (8) Religion, 2 (8 1997-2008) 1 (4)...... 164 0 9 (4) Figure 8.8: Distribution of Donors by Nationality, 1997-2008 ...... 166 Negeri Sembilan 0 1 (8) 2 (8) 1 (4) 2 (8) 13 (6) Figure 8.10: Donor’s Pledged Status, 1997-2008...... 169 Selangor 6 (38) 7 (54) 2 (8) 6 (24) 3 (12) 45 (21) Figure 8.11: Distribution of Donors by Type, 1997-2008...... 171 WP Kuala Lumpur 3 (19) 2 (15) 6 (24) 3 (12) 8 (31) 33 (15) Figure 8.13a: Distribution of Organ Donors by Blood Group, 1997-2008 ...... 174 FigureWP Putrajaya 8.13b: Distribution0 of Organ0 Donor by Blood0 Group0 Type (pie0 chart), 1997-1 (0) Perak 2008…………………………….…………………………………....1762 (13) 1 (8) 4 (16) 2 (8) 3 (12) 23 (11) FigureKedah 8.13c: Distribution1 (6) of Organ0 D onor by1 Blood (4) Group2 (8) Type (pie1 (4) chart), 11 (5) Perlis 2008…………………………….……………………………….…...1760 0 0 0 0 0 FigurePulau Pinang8.14a: Distribution2 (13) of Donors0 by Institution4 (16) of Origin,2 (8) 1997-20082 (8) ...... 17618 (8) FigurePahang 8.14b: Distribution0 of Donors0 by Referral1 (4) Site, 1997-20081 (4) ...... 1772 (8) 12 (6) FigureTerengganu 8.14c: Distribution0 of Donors0 by Procurement0 Site,1 (4) 1997-2008 0...... 178 2 (1) Kelantan 0 0 1 (4) 0 0 2 (1) Sabah 1 (6) 0 0 0 2 (8) 7 (3) Sarawak 0 0 0 0 0 0 Others** 0 0 1 (4) 1 (4) 0 3 (1) Unknown 0 0 0 0 0 15 (7)

168 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION Table 8.10: Donor’s Pledged Status, 1997-2008 Donor’sCADAVERIC ORGAN AND TISSUE DONATIONNo. (%) pledged 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 Total statusThere wasN=5 anN=7 increaseN=4 inN=13 the numberN=24 N=30 of potentialN=25 N=16 cadavericN=13 N=25 donors N=25 referred N=26 toN=213 the PledgedNational 0 Transplant 0 0 Procurement 0 0 Unit 5 (NTPMU) 6 nationwide2 3 from1 736 the 2 previous 25 donors (0) (0) (0) (0) (0) (17) (24) (13) (23) (4) (24) (8) (12) Non-year to 112 in 2008. The number of actual donors remained about the same at 26 for 5 7 4 13 24 25 19 14 10 24 19 24 188 pledgedthe year, which translated to a conversion rate of 23% and a donation rate of 0.94 per (100) (100) (100) (100) (100) (83) (76) (88) (77) (96) (76) (92) (88) donorsmillion population (Table 8.1). Of these 13 (50%) were brain dead donors who donated organs and tissues which were procured in the operating theatre, while another 13 were tissue donations after cardiac death (Table 8.2, Table 8.11). In total Figure87 organs 8.10: and Donor’s tissues Pledged were procured, Status, 1997-2008 comprising 40 corneas, 26 kidneys, 4 livers, 13 pairs of heart valves and 4 sets of long bones.

169 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008

List of Tables Pledged Non-Pledged Table 8.1: Number of Donations by Year, 1997-2008 ...... 154 Table 358.2: Number of organs procured, 1997-2008...... 155 Table 8.3: Potential Donor Referrals and Actual Donations by month, 2008 ...... 155 Table 8.4: Distribution of Donors by Age, 1997-2008…………………………..…157 Table 308.5: Distribution of Donors by Gender, 1997-2008...... 160 Table 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Table 258.7: Distribution of Donors by Religion, 1997-2008...... 164 Table 8.8: Distribution of Donors by Nationality, 1997-2008...... 166 Table 208.9: Distribution of Donors by State, 1997-2008...... 168 Table 8.10: Donor’s Pledged Status, 1997-2008 ...... 169 Table 8.11: Distribution of Donors by Type, 1997-2008 ...... 171 15 Table (n) of donors umber 8.12: Distribution of Donors by Cause of Death, 1997-2008………………..172 TableN 8.13: Distribution of Organ Donors by Blood Group, 1997-2008...... 174 Table 108.14a: Distribution of Donors by Institution of Origin, 1997-2008...... 176 Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 ...... 177 Table 8.14c: Distribution of Donors by Procurement Site, 1997-2008 ...... 178 5 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179

List of 0Figures Figure 8.1: Number1997 1998 of D 1999onations 2000 by 2001 Year, 2002 1997-2008 2003 2004...... 154 2005 2006 2007 2008 Figure 8.3: Potential Donor Referrals and Actual Donations by month, 2008..……156 Figure 8.4: Distribution of Donors by Age, 1997-2008...... 158 Figure 8.5: Distribution of Donors by Gender, 1997-2008 ...... 160 Figure 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Figure 8.7: Distribution of Donors by Religion, 1997-2008 ...... 164 Figure 8.8: Distribution of Donors by Nationality, 1997-2008 ...... 166 Figure 8.10: Donor’s Pledged Status, 1997-2008...... 169 Figure 8.11: Distribution of Donors by Type, 1997-2008...... 171 Figure 8.13a: Distribution of Organ Donors by Blood Group, 1997-2008 ...... 174 Figure 8.13b: Distribution of Organ Donor by Blood Group Type (pie chart), 1997- 2008…………………………….…………………………………....176 Figure 8.13c: Distribution of Organ Donor by Blood Group Type (pie chart), 2008…………………………….……………………………….…...176 Figure 8.14a: Distribution of Donors by Institution of Origin, 1997-2008 ...... 176 Figure 8.14b: Distribution of Donors by Referral Site, 1997-2008...... 177 Figure 8.14c: Distribution of Donors by Procurement Site, 1997-2008...... 178

170 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION Table 8.11: Distribution of Donors by Type, 1997-2008 CADAVERIC ORGAN AND TISSUE DONATIONNo. (%) Type of donors 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 Total There wasN=5 anN=7 increaseN=4 inN=13 the N=24 numberN=30 of potentialN=25 N=16 cadavericN=13 N=25 donorsN=25 referred N=26 N=213 to the BDNational Transplant Procurement Unit (NTPMU) nationwide from 73 the previous (Brain 4 6 4 11 20 17 8 10 5 14 15 13 127 Deathyear to 112(80) in(86) 2008.(100) The (85)number (83) of actual(57) dono(32) rs(63) remained (38) about(56) the(60) same(50) at 26(60) for donor)the year, which translated to a conversion rate of 23% and a donation rate of 0.94 per CDmillion population (Table 8.1). Of these 13 (50%) were brain dead donors who (tissuedonated organs and tissues which were procured in the operating theatre, while donorsanother 131 were1 tissue0 donations2 4 after 13 card iac17 death6 (Table8 8.2,11 Table10 8.11).13 In 86total after (20) (14) (0) (15) (17) (43) (68) (38) (62) (44) (40) (50) (40) Cardiac87 organs and tissues were procured, comprising 40 corneas, 26 kidneys, 4 livers, 13 Death)*pairs of heart valves and 4 sets of long bones. *CD involve tissue donations only. The number of donations throughout the year did not conform to any particular trend Figure(Table 8.11: 8.3). Distribution There were of 4 Donorspaediatric by Type,donors 1997-2008 (age 1 – 9 years) and 4 teenage donors which together constitute 31% of the total number of donors (Table 8.4). Another 23% (6/26) were in their twenties which means that 54% of donors were under the age of thirty. The BD mean age was CD 30.8 years, age range 2 – 71 years. Male donors outnumber35 female three to one (Table 8.5).

Two thirds of donors were Chinese, 23% Indian and 12% others by ethnicity (Table 8.6),30 62% were Buddhist by religion (Table 8.7). Two donors were non-Malaysian (Table 8.8). Majority of the donors came from the Federal Territory of Kuala Lumpur (31%)25 followed by Johor, Selangor and Perak (12% each) (Table 8.9). Only two out of the 26 actual donors (8%) had pledged to donate before and carried the donor card (Table20 8.10).

Cardiac disease was the most common cause of death, accounting for 23% of the brain (n) of donors umber 15 death and 54% of the cardiac death. Another 23% of brain dead donors and N 15% of post-cardiac death tissue donors died from motor vehicle accidents (Table 8.12).10 In 2008, the most common blood group among the 13 organ donors was group O rhesus positive (46%), followed by A positive (31%), B positive (15%), only 1 (8%) 5 from group A negative and no AB group (Table 8.13). When considered in totality since 1997, blood group O positive remained the most common group (40%) followed by B positive and A positive. 0 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 Most of the donations (58%) took place in Ministry of Health hospitals with 6 (23%)

from private hospitals and 3 (12%) from University hospitals (Table 8.14a). Sixty-five percent of the donors were found in the ICU, but there were also four direct referrals for tissue donation from the mortuary with three from the ward and one from emergency department (“brought in dead” BID) (Table 8.14b).

171 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008

List of Tables Table 8.1: Number of Donations by Year, 1997-2008 ...... 154 Table 8.2: Number of organs procured, 1997-2008...... 155 Table 8.3: Potential Donor Referrals and Actual Donations by month, 2008 ...... 155 Table 8.4: Distribution of Donors by Age, 1997-2008…………………………..…157 Table 8.5: Distribution of Donors by Gender, 1997-2008...... 160 Table 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Table 8.7: Distribution of Donors by Religion, 1997-2008...... 164 Table 8.8: Distribution of Donors by Nationality, 1997-2008...... 166 Table 8.9: Distribution of Donors by State, 1997-2008...... 168 Table 8.10: Donor’s Pledged Status, 1997-2008 ...... 169 Table 8.11: Distribution of Donors by Type, 1997-2008 ...... 171 Table 8.12: Distribution of Donors by Cause of Death, 1997-2008………………..172 Table 8.13: Distribution of Organ Donors by Blood Group, 1997-2008...... 174 Table 8.14a: Distribution of Donors by Institution of Origin, 1997-2008...... 176 Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 ...... 177 Table 8.14c: Distribution of Donors by Procurement Site, 1997-2008 ...... 178 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179

172 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION

CADAVERIC ORGAN AND TISSUE DONATION

173 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Table 8.13: Distribution of Organ Donors by Blood Group, 1997-2008 List of Tables No. (%) TableBlood 8.1:group Number 1997 of Donations 1998 by Year,1999 1997-2008 2000...... 154 2001 2002 2003 Table 8.2: Number N=4of organs N=6procured, N=41997-2008N=11...... 155 N=20 N=15 N=7 TableA positive 8.3: Potential1 (25)Donor Referrals2 (33) and0 (0)Actual Donations1 (9) by5 (25) month, 42008 (27) ...... 1554 (57) TableB positive 8.4: Distribution0 (0) of Donors1 (17) by Age,1 (25) 1997-2008…………………………..…157 5 (45) 4 (20) 4 (27) 2 (29) AB positive Table 8.5: Distribution1 (25) of Donors1 (17) by Gender,0 (0) 1997-20080 (0) ...... 1601 (5) 0 (0) 0 (0) O positive Table 8.6: Distribution2 (50) of Donors2 (33) by Ethnic3 (75) Group,5 (45) 1997-2008 10 (50)...... 162 7 (47) 1 (14) A negative 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) Table 8.7: Distribution of Donors by Religion, 1997-2008...... 164 Table 8.8: Distribution of Donors by Nationality, 1997-2008...... 166 No. (%) TableBlood 8.9:group Distribution 2004 of Donors2005 by State, 1997-2008...... 1682006 2007 2008 Total Table 8.10: Donor’sN=10 Pledged Status,N=5 1997-2008N=14...... 169 N=15 N=13 N=124 TableA positive 8.11: Distribution2 (20) of Donors1 (20) by Type,4 (29)1997-2008 6 ...... 171 (40) 4 (31) 34 (27) TableB positive 8.12: Distribution4 (40) of Donors2 (40) by Cause5 (36)of Death, 1997-2008………………..1723 (20) 2 (15) 33 (27) TableAB positive 8.13: Distribution0 (0) of Organ0 (0) Donors by2 (14)Blood Group,0 (0) 1997-2008 0 (0)...... 174 5 (4) TableO positive 8.14a: Distribution4 (40) of Donors2 (40) by Institution3 (21) of Origin,5 (33) 1997-20086 (46)...... 176 50 (40) TableA negative 8.14b: Distribution0 (0) of Donors0 (0) by Referral0 (0) Site, 1997-20081 (7) ...... 1771 (8) 2 (2) Blood group is only ascertained in brain dead donors and is not done for tissue donors post -cardiac deaths Table 8.14c: Distribution of Donors by Procurement Site, 1997-2008 ...... 178 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179 Figure 8.13a: Distribution of Organ Donors by Blood Group, 1997-2008 List of Figures Figure 8.1: Number of Donations by Year, 1997-2008...... 154 Figure 8.3: Potential DonorA+ Referrals andB+ Actual DonationsAB+ by month, 2008..……156 Figure 8.4: DistributionO+ of Donors by Age,A- 1997-2008...... 158 Figure 8.5: Distribution of Donors by Gender, 1997-2008 ...... 160 Figure20 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Figure 8.7: Distribution of Donors by Religion, 1997-2008 ...... 164 Figure18 8.8: Distribution of Donors by Nationality, 1997-2008 ...... 166 Figure16 8.10: Donor’s Pledged Status, 1997-2008...... 169 Figure 8.11: Distribution of Donors by Type, 1997-2008...... 171 Figure14 8.13a: Distribution of Organ Donors by Blood Group, 1997-2008 ...... 174 Figure 8.13b: Distribution of Organ Donor by Blood Group Type (pie chart), 1997- 12 2008…………………………….…………………………………....176 Figure10 8.13c: Distribution of Organ Donor by Blood Group Type (pie chart),

umber of donors (n) of donors umber 2008…………………………….……………………………….…...176 FigureN 8.14a:8 Distribution of Donors by Institution of Origin, 1997-2008 ...... 176 Figure 8.14b: Distribution of Donors by Referral Site, 1997-2008...... 177 6 Figure 8.14c: Distribution of Donors by Procurement Site, 1997-2008...... 178 4

0 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008

174 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION Figure 8.13b: Distribution of Organ Donor by Blood Group Type (pie chart), 1997- Figure2008CADAVERIC 8.13b: Dist ORGANribution AND of O rganTISSUE Don DONATIONor by Blood Group Type (pie chart), 1997-2008

There was an increase in the numberANega oftive potential cadaveric donors referred to the National Transplant Procurement Unit2% (NTPMU) nationwide from 73 the previous year to 112 in 2008. The number of actual donors remained aboutAPositive the same at 26 for the year,OPositive which translated to a conversion rate of 23% and a donation27% rate of 0.94 per million population40% (Table 8.1). Of these 13 (50%) were brain dead donors who donated organs and tissues which were procured in the operating theatre, while another 13 were tissue donations after cardiac death (Table 8.2, Table 8.11). In total 87 organs and tissues were procured, comprising 40 corneas, 26 kidneys, 4 livers, 13 pairs of heart valves and 4 sets of long bones.

The number of donations throughout the year did not conform to any particular trend (Table 8.3). There were 4 paediatric donors (age 1 – 9 years) and 4 teenage donors which together constitute 31% of the total number of donors (Table 8.4). Another 23% (6/26) were in their twenties which means that 54% of donors were under the age of thirty. The mean age was 30.8 years, age range 2 – 71 years.BPositive Male donors outnumber female three to one (Table 8.5). 27% ABPositive Two thirds of donors4% were Chinese, 23% Indian and 12% others by ethnicity (Table 8.6), 62% were Buddhist by religion (Table 8.7). Two donors were non-Malaysian (Table 8.8). Majority of the donors came from the Federal Territory of Kuala Lumpur (31%) followed by Johor, Selangor and Perak (12% each) (Table 8.9). Only two out of the 26 actual donors (8%) had pledged to donate before and carried the donor card Figure(Table 8.13c: 8.10). Distribution of Organ Donor by Blood Group Type (pie chart), 2008 Figure 8.13c: Distribution of Organ Donor by Blood Group Type (pie chart), 2008 Cardiac disease was the most common cause of death, accounting for 23% of the brain death and 54% of the cardiac death. Another 23% of brain dead donors and 15% of post-cardiac death A tisNegativesue donors died from motor vehicle accidents (Table 8% 8.12). In 2008, the most common blood group among the 13 organAPositive donors was group O rhesus positive (46%), followed by A positive (31%), B positive31% (15%), only 1 (8%) from group A negative and no AB group (Table 8.13). When considered in totality since 1997, blood group O positive remained the most common group (40%) followed by B positive and A positive.

Organ donors were sent to the operating theatre for procurement of organsBPositive (13/13) 15% while O tissuesPositive were mainly procured in the mortuary (12/13) (Table 8.14c). For the organ donors46% all were on inotropic support before procurement with the commonest combination being dopamine and noradrenaline (6/13)A B(TablePositive 8.15). 0%

175 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Table 8.14a: Distribution of Donors by Institution of Origin, 1997-2008 No. (%) ListDonors’ of Tables Institution of TableOrigin 8.1: Number of Donations1997 by Year,1998 1997-20081999 ...... 1542000 2001 2002 2003 Table 8.2: Number of organsN=5 procured,N=7 1997-2008N=4 ...... 155N=13 N=24 N=30 N=25 TableMOH 8.3: state/general Potential hospitals Donor Referrals2 (40) 5and (71) Actual 1 (25) Donations 10 (77) by 16month, (67) 200819 (63)...... 155 15 (60) TableMOH 8.4: district Distribution hospitals of Donors0 (0) by Age,0 (0) 1997-2008…………………………..…1570 (0) 2 (15) 0 (0) 3 (10) 4 (16) University hospitals 1 (20) 1 (14) 0 (0) 0 (0) 6 (25) 3 (10) 3 (12) TablePrivate 8.5: hospitals Distribution of Donors1 (20) by 1Gender, (14) 31997-2008 (75) 1 (8)...... 160 2 (8) 4 (13) 3 (12) TableHome 8.6: Distribution of Donors1 (20) by Ethnic0 (0) Group,0 (0) 1997-20080 (0) ...... 1620 (0) 1 (3) 0 (0) Table 8.7: Distribution of Donors by Religion, 1997-2008...... 164 Table 8.8: Distribution of Donors by Nationality, 1997-2008No. (%) ...... 166 Donors’ Institution of 2004 2005 2006 2007 2008 Total TableOrigin 8.9: Distribution of Donors by State, 1997-2008...... 168 Table 8.10: Donor’s Pledged Status,N=16 1997-2008N=13 ...... 169N=25 N=25 N=26 N=213 TableMOH 8.11: state/general Distribution hospitals of Donors12 (75) by Type,8 (62) 1997-200820 (80) ...... 17118 (72) 15 (58) 141 (66) TableMOH 8.12: district Distribution hospitals of Donors2 (13) by Cause0 (0) of Death,0 (0) 1997-2008………………..1723 (12) 0 (0) 14 (7) University hospitals 1 (6) 1 (8) 3 (12) 2 (8) 3 (12) 24 (11) TablePrivate 8.13: hospitals Distribution of Or1gan (6) Donors4 (31) by Blood2 (8) Group, 1997-20082 (8) 6 ...... 174(23) 30 (14) TableHome 8.14a: Distribution of Donors0 (0) by Institution0 (0) 0 of (0) Origin, 0 1997-2008(0) 2 (8)...... 176 4 (2) Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 ...... 177 TableFigure 8.14c: 8.14a: Distribution Distribution of of Donor Donorss by by Procurement Institution of Site, Origin, 1997-2008 1997-2008...... 178 Table 8.15: Distribution of Donors by Inotrope, 2008 ...... 179

List of Figures MOH state/G. Hospitals MOH district hospitals Figure 8.1: Number ofUniversity Donations hospitals by Year, 1997-2008...... 154Private hospitals Figure 8.3: Potential DonorHome (eye Referrals donors only)and Actual Donations by month, 2008..……156 Figure 8.4: Distribution of Donors by Age, 1997-2008...... 158 Figure35 8.5: Distribution of Donors by Gender, 1997-2008 ...... 160 Figure 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Figure30 8.7: Distribution of Donors by Religion, 1997-2008 ...... 164 Figure 8.8: Distribution of Donors by Nationality, 1997-2008 ...... 166 Figure25 8.10: Donor’s Pledged Status, 1997-2008...... 169 Figure 8.11: Distribution of Donors by Type, 1997-2008...... 171 Figure20 8.13a: Distribution of Organ Donors by Blood Group, 1997-2008 ...... 174 Figure 8.13b: Distribution of Organ Donor by Blood Group Type (pie chart), 1997- 15 umber of donors (n) of donors umber 2008…………………………….…………………………………....176 FigureN 8.13c: Distribution of Organ Donor by Blood Group Type (pie chart), 10 2008…………………………….……………………………….…...176 Figure 8.14a: Distribution of Donors by Institution of Origin, 1997-2008 ...... 176 Figure 8.14b:5 Distribution of Donors by Referral Site, 1997-2008...... 177 Figure 8.14c: Distribution of Donors by Procurement Site, 1997-2008...... 178 0 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008

176 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 CADAVERIC ORGAN AND TISSUE DONATIONNo. (%) Donor Referral Site 1997 1998 1999 2000 2001 2002 2003 There was an increaseN=5 in the numberN=7 ofN=4 potentialN=13 cadaveric N=24 donors N=30 referred N=25 to the ICUNational Transplant Procurement1 (20) 0 (0) Unit (NTPMU)0 (0) 1 nationwide(8) 14 (58) from 16 73(53) the 13 previous (52) Wardyear to 112 in 2008. The0 (0) number 0 (0)of actual0 (0) dono rs0 remained (0) 0 (0)about the1 (3) same at3 (12) 26 for Emergency department 0 (0) 0 (0) 0 (0) 0 (0) 3 (13) 4 (13) 1 (4) Mortuarythe year, which translated0 (0) to a conversion0 (0) 0 rate(0) of 23%0 (0) and a0 donation(0) 3 (10) rate of 60.94 (24) per Homemillion population (Table0 (0) 8.1).0 (0) Of these0 (0) 13 (50%)0 (0) were0 (0) brain dead1 (3) donors0 (0) who Datadonated not available organs and tissues4 (80) which7 (100) were4 (100) procured 12 (92) in the7 (29) operating 5 (17) theatre, 2 (8) while another 13 were tissue donations after cardiac death (Table 8.2, Table 8.11). In total 87 organs and tissues were procured, comprisingNo. 40 (%) corneas, 26 kidneys, 4 livers, 13 Donorpairs ofReferral heart valvesSite and2004 4 sets of long2005 bones.2006 2007 2008 Total N=16 N=13 N=25 N=25 N=26 N=213 ICUThe number of donations12 (75) throughout 8 (62) the year16 did(64) not conform17 (68) to 17any (65) particular 115 (54) trend Ward(Table 8.3). There were1 4(6) paediatric 3 (23) donors 3 (age (12) 1 – 91 years)(4) and3 (12)4 teenage 15 donors(7) Emergencywhich together department constitute 0 (0) 31% of0 the(0) total 3 number (12) of 1 donors(4) (Table1 (4) 8.4).13 Another (6) Mortuary 3 (19) 1 (8) 3 (12) 5 (20) 4 (15) 25 (12) Home23% (6/26) were in their0 (0) twenties 0 whic(0) h means0 (0) that 54%0 (0) of donors1 (4) were under2 (1) the Dataage not of available thirty. The mean0 (0) age was 1 30.8 (8) years,0 (0) age range1 (4) 2 – 71 years.0 (0) Male43 (20) donors outnumber female three to one (Table 8.5).

FigureTwo thirds8.14b: of Distribution donors were of ChinDonorsese, by 23% Referral Indian Site, and 1997-2008 12% others by ethnicity (Table 8.6), 62% were Buddhist by religion (Table 8.7). Two donors were non-Malaysian (Table 8.8). Majority of the donors came from the Federal Territory of Kuala Lumpur (31%) followed by Johor,ICU Selangor andWard Perak (12% each)Emergency (Table department8.9). Only two out of the 26 actual donorsMortuary (8%) had pledgedHome to donate beforeNot andavailable carried the donor card (Table 8.10). 35 Cardiac disease was the most common cause of death, accounting for 23% of the brain death and 54% of the cardiac death. Another 23% of brain dead donors and 30 15% of post-cardiac death tissue donors died from motor vehicle accidents (Table 8.12). In 2008, the most common blood group among the 13 organ donors was group O rhesus25 positive (46%), followed by A positive (31%), B positive (15%), only 1 (8%) from group A negative and no AB group (Table 8.13). When considered in totality20 since 1997, blood group O positive remained the most common group (40%) followed by B positive and A positive.

Most (n) of donors umber 15 of the donations (58%) took place in Ministry of Health hospitals with 6 (23%) N from private hospitals and 3 (12%) from University hospitals (Table 8.14a). Sixty-five percent10 of the donors were found in the ICU, but there were also four direct referrals for tissue donation from the mortuary with three from the ward and one from emergency department (“brought in dead” BID) (Table 8.14b). 5 Organ donors were sent to the operating theatre for procurement of organs (13/13) while 0 tissues were mainly procured in the mortuary (12/13) (Table 8.14c). For the organ donors1997 all 1998were 1999on inotropic 2000 2001 support 2002 before 2003 2004procurement 2005 2006 with 2007 the commonest 2008 combination being dopamine and noradrenaline (6/13) (Table 8.15).

177 153 Fifth Report of the CADAVERIC ORGAN AND TISSUE DONATION National TransplantFifth Registry Report Report of 2008of the the CADAVERIC ORGAN AND TISSUE DONATION NationalNational TransplantTransplant Registry Registry 2008 2008 Table 8.14c: Distribution of Donors by Procurement Site, 1997-2008 No. (%) ListDonor of TablesProcurement TableSite 8.1: Number of Donations1997 by1998 Year, 1997-20081999 2000...... 154 2001 2002 2003 Table 8.2: Number of organsN=5 procured,N=7 1997-2008N=4 ...... 155N=13 N=24 N=30 N=25 TableOperation 8.3: Potential theatre Donor4 (80) Referrals 6 (86) and Actual4 (100) Donations11 (85) by20 month, (83) 142008 (47)...... 155 8 (32) TableMortuary 8.4: Distribution of0 Donors(0) 1 by (14) Age, 1997-2008…………………………..…1570 (0) 2 (15) 3 (13) 14 (47) 14 (56) Ward 0 (0) 0 (0) 0 (0) 0 (0) 1 (4) 1 (3) 3 (12) TableHome 8.5: Distribution of1 (20)Donors 0by (0) Gender, 0 (0) 1997-2008 0 (0) ...... 1600 (0) 1 (3) 0 (0) TableData 8.6: not Distributionavailable of0 Donors(0) 0by (0) Ethnic 0 Group,(0) 1997-20080 (0) 0 ...... 162(0) 0 (0) 0 (0) Table 8.7: Distribution of Donors by Religion, 1997-2008...... 164 Table 8.8: Distribution of Donors by Nationality, 1997-2008No. (%) ...... 166 TableDonor 8.9: Procurement Distribution of Donors by State, 1997-2008...... 168 Site 2004 2005 2006 2007 2008 Total Table 8.10: Donor’s PledgedN=16 Status, N=13 1997-2008 N=25...... 169 N=25 N=26 N=213 TableOperation 8.11: Distribution theatre of9 (56) Donors by5 (38) Type, 1997-200814 (56) ...... 17116 (64) 13 (50) 124 (58) TableMortuary 8.12: Distribution of7 (44) Donors by5 (38) Cause of10 Death, (40) 1997-2008………………..1727 (28) 12 (46) 75 (35) Ward 0 (0) 2 (15) 1 (4) 2 (8) 0 (0) 10 (5) TableHome 8.13: Distribution of0 (0)Or gan Donors0 (0) by Blood0 (0) Group,0 (0)1997-2008 1 (4)...... 174 3 (1) TableData 8.14a: not available Distribution 0of (0) Donors 1by (8) Institution 0 (0) of Origin,0 (0) 1997-2008 0 (0)...... 176 1 (0) Table 8.14b: Distribution of Donors by Referral Site, 1997-2008 ...... 177 Table 8.14c: Distribution of Donors by Procurement Site, 1997-2008 ...... 178 TableFigure 8.15: 8.14c: Distribution Distribution of ofDonors Donors by byInotrope, Procurement 2008 ...... 179 Site, 1997-2008

List of Figures Figure 8.1: Number ofOperation Donations theater by Year, 1997-2008Mortuary...... 154Ward Figure 8.3: Potential DonorHome Referrals and Actual DonationsNot available by month, 2008..……156 Figure 8.4: Distribution of Donors by Age, 1997-2008...... 158 Figure35 8.5: Distribution of Donors by Gender, 1997-2008 ...... 160 Figure 8.6: Distribution of Donors by Ethnic Group, 1997-2008...... 162 Figure30 8.7: Distribution of Donors by Religion, 1997-2008 ...... 164 Figure 8.8: Distribution of Donors by Nationality, 1997-2008 ...... 166 Figure 8.10: Donor’s Pledged Status, 1997-2008...... 169 25 Figure 8.11: Distribution of Donors by Type, 1997-2008...... 171 Figure 8.13a: Distribution of Organ Donors by Blood Group, 1997-2008 ...... 174 Figure20 8.13b: Distribution of Organ Donor by Blood Group Type (pie chart), 1997- 2008…………………………….…………………………………....176

Figure (n) of donors umber 15 8.13c: Distribution of Organ Donor by Blood Group Type (pie chart), N 2008…………………………….……………………………….…...176 Figure 8.14a: Distribution of Donors by Institution of Origin, 1997-2008 ...... 176 10 Figure 8.14b: Distribution of Donors by Referral Site, 1997-2008...... 177 Figure 8.14c: Distribution of Donors by Procurement Site, 1997-2008...... 178 5

0 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008

178 152 Fifth Report of the FifthNationalFifth ReportReport Transplant of thethe Registry 2008 CADAVERIC ORGAN AND TISSUE DONATION National National TransplantTransplant Registry Registry 2008 2008 CADAVERIC ORGAN AND TISSUE DONATION Table 8.15: Distribution of Donors by Inotrope, 2008 InotropeCADAVERIC ORGAN AND TISSUE DONATIONNo. (%) Dopamine 2 (15) Dopamine/NoradrenalineThere was an increase in the number of potential cadaveric6 (46) donors referred to the Dopamine/AdrenalineNational Transplant Procurement Unit (NTPMU) nationwide2 (15) from 73 the previous year to 112 in 2008. The number of actual donors remained about the same at 26 for Dopamine/Dobutamine/Adrenaline 1 (8) the year, which translated to a conversion rate of 23% and a donation rate of 0.94 per Dopamine/Dobutamine/Adrenaline/Noradrenalinemillion population (Table 8.1). Of these 13 (50%) were1 (8) brain dead donors who Missingdonated organs and tissues which were procured in 1 the (8) operating theatre, while Totalanother 13 were tissue donations after cardiac death (Table13 (100) 8.2, Table 8.11). In total 87 organs and tissues were procured, comprising 40 corneas, 26 kidneys, 4 livers, 13 pairs of heart valves and 4 sets of long bones.

179 153

Fifth Report of the National Transplant Registry 2008 APPENDIX A FifthFifth Report Report of the of the NationalNational Transplant Transplant Registry Registry 2008 2008 APPENDIX A

APPENDIX A APPENDIX A DATA MANAGEMENT DATA MANAGEMENT Data integrity of a register begins from the data source, data collection tools, data Dataverification integrity and of data a register entry beginsprocess. from Registry the data data source, is never data as collectionperfect as tools,the clinical data verificationtrial data. Cautionand data should entry bepro usedcess. when Registry interpreting data is thenever result. as perfect as the clinical trial data. Caution should be used when interpreting the result. The data management personnel in the Register are trained based on the standard Theoperating data management procedure (SOP). personnel The indata the entry Regi processster are is trained also desi basedgned on to theenhance standard data operatingquality. Qualityprocedure assurance (SOP). procedures The data entry are in process place at is all also stages desi togned ensure to enhance the quality data of quality.data. Quality assurance procedures are in place at all stages to ensure the quality of data. The NTR maintains different databases for each of the organs i.e. blood and marrow Thetransplant, NTR maintains bone and different tissue transplant,databases for corn eachea transplant,of the organs heart i.e. andblood lung and transplant, marrow transplant,kidney transplant bone and and tissue liver transplant. transplant, De cornpendingea transplant, on the volume heart and of data, lung each transplant, organ’s kidneydata were transplant stored andin either liver Micrtransplant.osoft Access Depending or SQL on Serverthe volume 2000. of data, each organ’s data were stored in either Microsoft Access or SQL Server 2000. Registry ICT infrastructure and data centre RegistryThe operations ICT infrastructure of the NTR and are data supported centre by an extensive ICT infrastructure to ensure Theoperational operations efficiency of the NTR and areeffectiveness. supported by an extensive ICT infrastructure to ensure operational efficiency and effectiveness. NTR subscribes to co-location service with a high availability and highly secured data NTRcentre subscribes at Cyberjaya to co-location and at Jalan service Pahang, with aKual higha availabilityLumpur. This and is highly in order secured to provide data centreNTR atwith Cyberjaya quality assuredand at Jalaninternet Pahang, hosting Kual searvices Lumpur. and state-of-tThis is inhe-art order physical to provide and NTRlogical with security quality featur assuredes without internet having hosting to isenvestrvices in andcostly state-of-t data centrehe-art setup physical internally. and logicalState-of-the-art security featur physicales without security having features to invest implemented in costly data includes centre setup anti-static internally. raised State-of-the-artflooring, fire protection physical security with smoke features and implemented heat alarm warningincludes system, anti-static biometric raised flooring,security fire access, protection video camera with smoke surveillan and ce heat system, alarm uninterrupted warning system, power biometric supply, securityenvironmental access, control. video camera surveillance system, uninterrupted power supply, environmental control. Other managed security services include patch management of the servers, antivirus Othersignature managed monitoring security and servi update,ces include firewall patch traffic management monitoring of and the intrusion servers, antivirusdetection, signaturesecurity incidencemonitoring response, and update, data firewallbackup servicetraffic monitoringdone on a daily, and intrusionweekly and detection, monthly securitybasis, dataincidence recovery response, simulation data backup to verify service that backupdone on worksa daily, wh weeklyich is and done monthly at least basis,once datayearly, recovery network simulation security scan to verify and pene that tration backup test works done wh onich a half-yearly is done at leastbasis, oncesecurity yearly, policy network maintenance, security scan maintenance and pene andtration monitoring test done of on aud a half-yearlyit trail. Managed basis, securitysystem policyservices maintenance, are also provided maintenance such as and usage monitoring and performance of audit trail. report, Managed operating systemsystem services maintenance are also and provided monitoring, such as bandw usageidth and monitoring performance and report, systems operating health systemmonitoring. maintenance and monitoring, bandwidth monitoring and systems health monitoring. Data sources DataSDPs sources or Source Data Providers of the National Transplant Registry comprise of SDPscentres or forSource various Data transplanted Providers of orga the ns National throughout Transplant Malaysia Registry. Bone comprise and tissue of centrestransplant, for cornea various transplant, transplanted kidney orga transplantns throughout and liver Malaysia transplant. BoneSDPs submit and tissue Case transplant,Report Forms cornea (CRFs) transplant, to NTR. kidney Blood transplant and marrow and liver transplant transplant (BMT) SDPs andsubmit heart Case and Reportlung transplant Forms (CRFs) (HLT) to SDPs NTR. submit Blood data and via marrow web applications transplant (BMT) NTR-BMT and heartand NTR- and lungHLT transplant respectively. (HLT) SDPs submit data via web applications NTR-BMT and NTR- HLT respectively.

180 180 Fifth Report of the National Transplant Registry 2008 Fifth Report of the APPENDIX A Fifth Report of the National Transplant Registry 2008 APPENDIX A National Transplant Registry 2008

For the purpose of verifying patient’s outcome regarding death and lost to follow-up, NTR uses data from the National Vital Registration System. APPENDIX A Data Flow Process DATA MANAGEMENT This section describes the data management flow process of the National Transplant Registry. Data integrity of a register begins from the data source, data collection tools, data verification and data entry process. Registry data is never as perfect as the clinical 1) SDP 10) Query trial data. Caution should be used when interpreting the result.

2) Data reporting by SDP & Tracking Submission. The data management personnel in the Register are trained based on the standard operating procedure (SOP). The data entry process is also designed to enhance data quality. Quality assurance procedures are in place at all stages to ensure the quality of 3) Visual review, Data Entry, Data Editing data. 4) Edit Checks Run The NTR maintains different databases for each of the organs i.e. blood and marrow transplant, bone and tissue transplant, cornea transplant, heart and lung transplant, 5) Data review and coding kidney transplant and liver transplant. Depending on the volume of data, each organ’s data were stored in either Microsoft Access or SQL Server 2000. 6) Expert Panel Review Registry ICT infrastructure and data centre The operations of the NTR are supported by an extensive ICT infrastructure to ensure 7) Final Query resolution / data cleaning (if any) operational efficiency and effectiveness.

NTR subscribes to co-location service with a high availability and highly secured data 8) Database lock centre at Cyberjaya and at Jalan Pahang, Kuala Lumpur. This is in order to provide NTR with quality assured internet hosting services and state-of-the-art physical and 9) Data analysis and report writing logical security features without having to invest in costly data centre setup internally. State-of-the-art physical security features implemented includes anti-static raised flooring, fire protection with smoke and heat alarm warning system,SDP biometric Data reporting and Submission tracking security access, video camera surveillance system, uninterrupted powerData supply, reporting by SDP is done via Case Report Forms or Web Applications e-Case environmental control. Report Forms. Different types of forms are used for different organs/tissues.

Other managed security services include patch management of the servers,For antivirus blood and marrow transplant, NTR collects data via Blood and Marrow signature monitoring and update, firewall traffic monitoring and intrusionTransplant detection, Notification Form and Blood and Marrow Ad Hoc Event Notification security incidence response, data backup service done on a daily, weekly andForm monthly through web application NTR-BMT. Data collected from NTR-BMT is basis, data recovery simulation to verify that backup works which is donesynchronised at least daily to a master database in CRC to track data submission and generate once yearly, network security scan and penetration test done on a half-yearlyqueries basis, to site. All retrospective data was mapped and transferred to the current security policy maintenance, maintenance and monitoring of audit trail.system. Managed system services are also provided such as usage and performance report, operating system maintenance and monitoring, bandwidth monitoring and systemsFor bone health and tissue transplant, NTR collects data via Bone and Tissue Transplant monitoring. Notification Form.

Data sources For cornea transplant, NTR collects data via Cornea Transplant Notification Form and SDPs or Source Data Providers of the National Transplant Registry compriseCornea Transplant of Outcome Form. centres for various transplanted organs throughout Malaysia. Bone and tissue transplant, cornea transplant, kidney transplant and liver transplant SDPs submitFor heart Case and lung transplant, NTR collects data via Malaysian Heart and Lung Report Forms (CRFs) to NTR. Blood and marrow transplant (BMT) andTransplant heart and Notification Form and Malaysian Heart and Lung Transplant Follow-Up lung transplant (HLT) SDPs submit data via web applications NTR-BMTForm and NTR- through web application NTR-HLT. Data collected from NTR-HLT is HLT respectively.

181 180 Fifth Report of the National Transplant Registry 2008 APPENDIX A FifthFifth Report Report of the of the NationalNational Transplant Transplant Registry Registry 2008 2008 APPENDIX A

synchronised daily to a master database in NTR to track data submission and generate queries to site. APPENDIX A For kidney transplant, NTR collects data via Renal Transplant Notification Form and DATARenal MANAGEMENTTransplant Outcome Form. For annual survey purposes, NTR also collects data via Renal Transplant Annual Return Form and Renal Transplant Annual Quality of DataLife integrity and Rehabilitation of a register Assessmentbegins from Formthe data. source, To further data collection ensure timeliness tools, data of verificationnotification, and any data patient entry pro whocess. has Registry been notified data is tonever National as perfect Renal as the Registry clinical as trialtransplanted data. Caution will beshould automatically be used when flagged interpreting to NTR. theSimilarly, result. NTR also automatically flags to NRR if there’s a patient with graft failure. The data management personnel in the Register are trained based on the standard operatingFor liver proceduretransplant, (SOP).NTR collects The data data entry via Liver process Transplant is also desiNotificationgned to enhance Form. data quality. Quality assurance procedures are in place at all stages to ensure the quality of data.Data submissions by SDPs of Bone and Tissue, Cornea, Kidney and Liver Transplant were tracked by NTR Computer System collectively. The NTR maintains different databases for each of the organs i.e. blood and marrow transplant,Visual review bone will and then tissue be performed transplant, to corn checkea transplant,for completeness heart andand lungobvious transplant, errors or kidneyproblems. transplant Data and without liver transplant. obvious problems Depending were on the entered volume into of data, the relevanteach organ’s NTR dataorgan’s were system. stored in Dataeither entry Micr willosoft not Access be performed or SQL Server if a critical 2000. variable on the CRF is missing or ambiguous. The CRF is returned to the SDP for verification. Prior to Registryregistering ICT patient,infrastructure a verification and data processcentre is done to ensure there are no duplicate Thepatients operations and/or of notifications. the NTR are supportedAfter verification, by an extensive data is thenICT enteredinfrastructure into the to relevantensure operationalNTR organ efficiency system. and effectiveness.

NTRThere subscribes are a few to in-builtco-location functionalities service with at athe high data availability entry page and that highly serve secured to improve data centredata quality.at Cyberjaya One and such at function Jalan Pahang, is auto Kual calculationa Lumpur. functionality This is in toorder reduce to provide error of NTRhuman with calculation. quality assured There internet is also hosting inconsis servicestency and check state-of-t functionalityhe-art physical that disables and logicalcertain security fields if featur they esare without answered having in a tocer investtain manner. in costly Whendata centre value setup entered internally. is out of State-of-the-artrange, user is prompted physical for security correct featuresvalue. implemented includes anti-static raised flooring, fire protection with smoke and heat alarm warning system, biometric securityReal time access, reports video are cameraalso provided surveillan in ce the system, web application. uninterrupted The aggregatedpower supply, data environmentalreports are presented control. in the form of tables and graphs. The aggregated data reports are typically presented in two manners, one as centre’s own data aggregated data report Otherand secondmanaged as security registry’s servi ovecesrall include aggregated patch management data report. of Each the servers, participating antivirus site signaturesubmitting monitoring data via theand web update, application firewall is tra thfficerefore monitoring able to compareand intrusion itself detection,against the securityoverall incidenceregistry’s response,average. data backup service done on a daily, weekly and monthly basis, data recovery simulation to verify that backup works which is done at least onceVisual yearly, Review, network Data security Entry, Datascan Editingand pene tration test done on a half-yearly basis, securityData received policy maintenance, by the NTR maintenance was logged and in and monitoring manually of reviewed audit trail. to Managed check for systemcompleteness services and are obvious also provided errors suchor probl as ems. usage Data and performancewithout obvious report, problems operating was systementered maintenanceinto the relevant and NTR’s monitoring, organ transp bandwlantidth system. monitoring Data with and problems systems was health sent monitoring.to SDP as queries. As data for kidney transplant is inter-related with National Renal Registry’s patient data, an additional verification process is performed to ensure no Dataduplicate sources patient and renal replacement therapy is reported. SDPs or Source Data Providers of the National Transplant Registry comprise of centresEdit Check for variousRun transplanted organs throughout Malaysia. Bone and tissue transplant,Edit checks cornea were transplant,performed kidneyperiodically transplant to identify and liver missing transplant data, outSDPs of submitrange values, Case Reportinconsistent Forms data, (CRFs) invalid to NTR. values Blood and anderror marrow with duplication. transplant (BMT) Data cleaning and heart is and then lungperformed transplant based (HLT) on the SDPs results submit of edit data checks. via web Data applications discrepancies NTR-BMT that were and resolved NTR- HLTwere respectively. then entered into the system. Data update and data checking of the dataset is

182 180 Fifth Report of the National Transplant Registry 2008 Fifth Report of the APPENDIX A Fifth Report of the National Transplant Registry 2008 APPENDIX A National Transplant Registry 2008

performed when there is a query of certain fields when necessary. It could be due to request by user, correction of data based on checking from data query or after APPENDIX A receiving results for preliminary data analysis. Any data discrepancy found is verified against the source CRF and resolved within the Register office where possible. DATA MANAGEMENT Otherwise the specific data query report will be generated and forwarded to the SDP to clarify and resolve the data discrepancy. Data standardisation process is also done Data integrity of a register begins from the data source, data collectionfor tools, missing data data based on derivation from existing data. verification and data entry process. Registry data is never as perfect as the clinical trial data. Caution should be used when interpreting the result. Data Review and Coding Data coding of retrospective data and free text data was performed by registry The data management personnel in the Register are trained based on themanager standard and further verified by expert panel member. The expert panel comprising of operating procedure (SOP). The data entry process is also designed to enhancemembers data with expertise and knowledge in the relevant area provided the quality quality. Quality assurance procedures are in place at all stages to ensure thecontrol quality on of the assessment of coding by data manager. They ensure that complex data. medical data are reviewed and assessed to detect clinical nuances in the data.

The NTR maintains different databases for each of the organs i.e. blood andFinal marrow Query Resolution / Data Cleaning / Database Lock transplant, bone and tissue transplant, cornea transplant, heart and lungA transplant, final edit check run was performed to ensure that data is clean. All queries were kidney transplant and liver transplant. Depending on the volume of data, eachresolved organ’s before the database is locked to ensure data quality and integrity. Data is data were stored in either Microsoft Access or SQL Server 2000. subsequently exported to the statistician for analysis.

Registry ICT infrastructure and data centre Data Release Policy The operations of the NTR are supported by an extensive ICT infrastructureOne to ensure of the primary objectives of the Registry is to make data available to the operational efficiency and effectiveness. transplant community. The Registry would appreciate that users acknowledge the Registry for the use of the data. Any request for data that requires a computer run NTR subscribes to co-location service with a high availability and highly securedmust be data made in writing (by e-mail, fax, or registered mail) accompanied with a Data centre at Cyberjaya and at Jalan Pahang, Kuala Lumpur. This is in orderRelease to provide Application Form and signed Data Release Agreement Form. These requests NTR with quality assured internet hosting services and state-of-the-art physicalneed prior and approval by the NTR Steering Committee before data can be released. logical security features without having to invest in costly data centre setup internally. State-of-the-art physical security features implemented includes anti-staticDistribution raised of Report flooring, fire protection with smoke and heat alarm warning system,The biometric MST has made a grant towards the cost of running the registry and report security access, video camera surveillance system, uninterrupted powerprinting. supply, It is available on the website www.mst.org.my. environmental control.

Other managed security services include patch management of the servers, antivirus signature monitoring and update, firewall traffic monitoring and intrusion detection, security incidence response, data backup service done on a daily, weekly and monthly basis, data recovery simulation to verify that backup works which is done at least once yearly, network security scan and penetration test done on a half-yearly basis, security policy maintenance, maintenance and monitoring of audit trail. Managed system services are also provided such as usage and performance report, operating system maintenance and monitoring, bandwidth monitoring and systems health monitoring.

Data sources SDPs or Source Data Providers of the National Transplant Registry comprise of centres for various transplanted organs throughout Malaysia. Bone and tissue transplant, cornea transplant, kidney transplant and liver transplant SDPs submit Case Report Forms (CRFs) to NTR. Blood and marrow transplant (BMT) and heart and lung transplant (HLT) SDPs submit data via web applications NTR-BMT and NTR- HLT respectively.

183 180 Fifth Report of the National Transplant Registry 2008 APPENDIX B FifthFifth Report Report of the of the NationalNational Transplant Transplant Registry Registry 2008 2008 APPENDIX B

APPENDIX B APPENDIX B STATISTICAL METHODS FOR NTR STATISTICAL METHODS FOR NTR The statistical methods described were used to summarise the data collected from the TheNational statistical Transplant methods Registrydescribed (NTR).were used Thes toe summarise analyses werethe data generated collected for from different the Nationaltypes of Transplant transplant, Registrysuch as bone (NTR). and marrow, These analyses bone and were tissue, generated cornea, heart for different and lung, typesliver of and transplant, kidney. such as bone and marrow, bone and tissue, cornea, heart and lung, liver and kidney. 1. Overall 1. TheOverall stock and flow tables summarised transplant activity in Malaysia. Places and Thecentres stock of and transplant flow tables activities summarised were also transplant reported. activity Treatment in Malaysia.rate was calculated Places and by centresthe ratio of transplantof the count activities of number were of alsonew reported.patients orTreatment prevalent rate patie wasnts calculatedin a given byyear theto ratio the mid-yearof the count population of number of of Malaysia new pa tients in that or year,prevalent and expressedpatients in ina given per million- year to population. the mid-year Annual population death rates of Malaysia are calculated in that by year, dividing and expressed the number in perof deaths million- in a population.year by the Annual estimated death mid-year rates ar patiente calculated population. by dividing the number of deaths in a year by the estimated mid-year patient population. 2. Recipient’s Characteristics 2. TheRecipient’s information Characteristics on recipient’s characteristics was summarised in this section. These Thetables information included on the recipient’s recipient’s characteristics age, gender, was ethnic summarised group, serologyin this section. data, primaryThese tablesdisease(s), included indication the recipient’s for transplantat age, gender,ion, ethnic current group, immunosuppressive serology data, primary drug(s) disease(s),treatment, indication etc. For summarising for transplantat continuousion, current data, the immunosuppressive mean, standard deviation, drug(s) treatment,median, minimum etc. For summarisingand maximum continuous were repo rted. data, On the the mean, other standard hand, both deviation, the count median,and percentages minimum were and maximumreported for were discrete repo darted.ta. OnInvariably, the other there hand, are bothsituations the count where andthere percentages is missing were data. reported For purposes for discrete of anal daysis,ta. Invariably, subjects with there missing are situations continuous where data therehad is their missing values data. imputed For purposes by using of anal the ysis, mean subjects from measures with missing of other continuous records. data For haddiscrete their data, values analysis imputed was by confined using the to available mean from data measures and no imputation of other records.was done. For discrete data, analysis was confined to available data and no imputation was done. 3. Transplant Activity 3. TheseTransplant tables Activity provided the information on transplant activity, such as the time of Thesetransplant, tables type provided of transplant the information, duration of on surgery transplant etc. activity, such as the time of transplant, type of transplant, duration of surgery etc. 4. Outcome 4. TheOutcome outcome of a transplant activity was tabulated in this section. Kaplan Meier Themethod outcome was used of a to transplant estimate the activity probability was tabulated of survival in at this different section. durations. Kaplan Meier method was used to estimate the probability of survival at different durations. Time trend analysis was used to assess the association between time (e.g. year) and Timeresponse trend variablesanalysis was(e.g. used outcome to assess). Statistical the association tests such between as Spearman time (e.g. correlation year) and test responseand chi-square variables test (e.g. may outcome be used). toStatistical test whether tests orsuch not as the Spearman linear trend correlation is statistically test andsignificant. chi-square Unfortunately, test may be used this wasto test not whether performed or not as thethe registlinearry trend is in isits statistically fifth year of significant.operation. Unfortunately, As more data isthis accrued was not to performed its database as overthe regist time,ry time is in trend its fifth analysis year ofwill operation.be of interest As more in future. data is accrued to its database over time, time trend analysis will be of interest in future.

184 184 Fifth Report of the APPENDIX C National TransFifthplant Report Registr ofy the 2008 National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008 APPENDIX C APPENDIX C GLOSSARY GLOSSARY AIIRB Angiotensin II Receptor Blocker AIIRBACE AngiotensinAngiotensin II Converting Receptor Blocker Enzyme ACEADPKD Angiotensin Autosomal DominantConverting Polycystic Enzyme Kidney Disease ADPKDAG AutosomalAntigen Dominant Polycystic Kidney Disease AGALL AntigenAcute Lymphocytic Leukaemia ALLALP AcuteAlkaline Lymphocytic Phosphatase Leukaemia ALPALT AlkalineAlanine TransferasePhosphatase ALTAML AlanineAcute Myelogenous Transferase Leukaemia AMLApr AcuteApril Myelogenous Leukaemia AprASH AprilAmpang Puteri Specialist Hospital ASHATG AmpangAnti-thymocyte Puteri Specialist globulin Hospital ATGAug Anti-thymocyteAugust globulin AugAVM AugustArterio-venous Malformation AVMAZA Arterio-venousAzathioprine Malformation AZABMI AzathioprineBody Mass Index BMIBMT BodyBlood Mass and MarrowIndex Transplantation BMTBP BloodBlood and Pressure Marrow Transplantation BPBD BloodBrain PressureDeath BDBID Brainbrought Death in dead BIDCAPD brought Continuous in dead Ambulator y Peritoneal Dialysis CAPDCD ContinuousCardiac Death Ambulator y Peritoneal Dialysis CDCDA CardiacCongenital Death Dyserythropoeitic Anaemia CDACF CongenitalCounting Fingers Dyserythropoeitic Anaemia CFCHD CountingCoronary Fingers Heart Disease CHDCKD CoronaryChronic Kidney Heart Disease Disease CKDCMV ChronicCytomegalovirus Kidney Disease CMVCRF CytomegalovirusCase Report Form CRFDec CaseDecember Report Form DecDF DecemberDeep Frozen DFDFS DeepDisease-free Frozen Survival DFSFD Disease-freeFreeze Dried Survival FDFeb FreezeFebruary Dried FebFK506 February Tacrolimus FK506GCT TacrolimusGerm Cell Tumour GCTGFR GermGlomerular Cell Tumour Filtration Rate GFRGMC GlomerularGleneagles FiltrationMedical Centre Rate GMCGS GleneaglesGentamicin Medical and Streptomycin Centre GSGVHD Gentamicin Graft Versus and Host Streptomycin Disease GVHDHA GraftHospital Versus Ampang Host Disease HAHb HospitalHaemoglobin Ampang HbHbsAg Haemoglobin Hepatitis B surface Antigen HbsAgHCV HepatitisHepatitis B C surface Virus Antigen HCVHD HepatitisHaemodialysis C Virus HDHDL HaemodialysisHigh Density Lipoprotein HDL High Density Lipoprotein

185 185 Fifth Report of the NationalFifth Report Transplant of the Registry 2008 APPENDIX C National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008 HKL Hospital Kuala Lumpur HLA Human Leukocyte Antigen APPENDIX C HLT Heart Lung Transplant HM Hand Movement GLOSSARY HPP Hospital Pulau Pinang HSCT Haematopoietic Stem Cell Transplantation AIIRB Angiotensin II Receptor Blocker HUKM Hospital Universiti Kebangsaan Malaysia ACE Angiotensin Converting Enzyme HUSM Hospital Universiti Sains Malaysia ADPKD Autosomal Dominant Polycystic Kidney Disease ICT Information and Communication Technology AG Antigen ICU Intensive Care Unit ALL Acute Lymphocytic Leukaemia IHD Ischaemic Heart Disease ALP Alkaline Phosphatase IJN Institut Jantung Negara ALT Alanine Transferase IL2R Interleukin 2 Receptor AML Acute Myelogenous Leukaemia IOL Intraocular Lens Apr April Jan January ASH Ampang Puteri Specialist Hospital JNC Joint National Committee ATG Anti-thymocyte globulin Jul July Aug August Jun June AVM Arterio-venous Malformation KLA HKL, Adult AZA Azathioprine KLP HKL, Paediatric BMI Body Mass Index LDL Low Density Lipoprotein BMT Blood and Marrow Transplantation LQ Lower Quartile BP Blood Pressure LWE Lam Wah Ee Hospital BD Brain Death Mar March BID brought in dead Max Maximum CAPD Continuous Ambulatory Peritoneal Dialysis MDS Myelodysplastic Syndrome CD Cardiac Death Min Minimum CDA Congenital Dyserythropoeitic Anaemia MK McCarey and Kaufman CF Counting Fingers mm millimetres CHD Coronary Heart Disease MMF Mycophenolate Mofetil CKD Chronic Kidney Disease MOH Ministry of Health, Malaysia CMV Cytomegalovirus Nov November CRF Case Report Form MVA Motor Vehicle Accident Dec December NCEP National Cholesterol Education Program DF Deep Frozen NET Neuroectodermal Tumour DFS Disease-free Survival NPL No Perception of Light FD Freeze Dried NTPMU National Transplant Procurement and Management UnitFeb February NTR National Transplant Registry FK506 Tacrolimus Oct October GCT Germ Cell Tumour Paed Paediatric GFR Glomerular Filtration Rate PBSC Peripheral Blood Stem Cells GMC Gleneagles Medical Centre PJ Petaling Jaya GS Gentamicin and Streptomycin PK Penetrating Keratoplastry GVHD Graft Versus Host Disease PL Perception of Light HA Hospital Ampang pmp per million population Hb Haemoglobin QoL Quality of Life HbsAg Hepatitis B surface Antigen RMS Rhabdomyosarcoma HCV Hepatitis C Virus SD Standard Deviation HD Haemodialysis HDL High Density Lipoprotein

186 185 Fifth Report of the APPENDIX C National TransFifthplant Report Registr ofy 2008the National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008 SDP Source Data Provider SeptAPPENDIX C September SJA Sime Darby Medical Centre, Subang Jaya (Adult) SJPGLOSSARY Sime Darby Medical Centre, Subang Jaya (Paediatric) SOP Standard Operating Procedure SQLAIIRB Structured Angiotensin Query II Receptor Language Blocker UKMACE UniversitiAngiotensin Kebangsaan Converting Malaysia Enzyme UMAADPKD UMMC, Autosomal Adult Dominant Polycystic Kidney Disease UMMCAG UniversityAntigen Malaya Medical Centre UMPALL UMMC,Acute Lymphocytic Paediatric Leukaemia UQALP UpperAlkaline Quartile Phosphatase USAALT UnitedAlanine States Transferase of America USMAML UniversitiAcute Myelogenous Sains Malaysia Leukaemia VAApr VisualApril Acuity VODASH Veno-OcclusiveAmpang Puteri Specialist Disease Hospital WPATG WilayahAnti-thymocyte Persekutuan globulin (Federal Territory) Aug August AVM Arterio-venous Malformation AZA Azathioprine BMI Body Mass Index BMT Blood and Marrow Transplantation BP Blood Pressure BD Brain Death BID brought in dead CAPD Continuous Ambulatory Peritoneal Dialysis CD Cardiac Death CDA Congenital Dyserythropoeitic Anaemia CF Counting Fingers CHD Coronary Heart Disease CKD Chronic Kidney Disease CMV Cytomegalovirus CRF Case Report Form Dec December DF Deep Frozen DFS Disease-free Survival FD Freeze Dried Feb February FK506 Tacrolimus GCT Germ Cell Tumour GFR Glomerular Filtration Rate GMC Gleneagles Medical Centre GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

187 185 Fifth Report of the NationalFifth Transplant Report of Registry the 2008 APPENDIX D National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008 APPENDIX D APPENDIX C DIRECTORY OF PARTICIPATING CENTRES GLOSSARY

Blood and Marrow Transplant Services AIIRB Angiotensin II Receptor Blocker ACE Angiotensin Converting Enzyme MOH ADPKD Autosomal Dominant Polycystic Kidney Disease AG Antigen ALL Acute Lymphocytic Leukaemia Hospital Ampang Hospital Kuala Lumpur ALP Alkaline Phosphatase Jalan Mewah Utara Paediatrics BMT Unit Pandan Mewah Institute Paediatrics ALT Alanine Transferase 68000 Ampang Jalan Pahang AML Acute Myelogenous Leukaemia Kuala Lumpur 50586 Kuala Lumpur Apr April Tel : ( 03)42896000 Ext : 6381 Tel : ( 03)26155555 Ext : 6905ASH Ampang Puteri Specialist Hospital Fax : ( 03)42970059 Fax : ( 03)26948187 ATG Anti-thymocyte globulin Aug August AVM Arterio-venous Malformation AZA Azathioprine BMI Body Mass Index PRIVATE BMT Blood and Marrow Transplantation BP Blood Pressure BD Brain Death Ampang Puteri Specialist Hospital Gleneagles Medical Centre, PenangBID brought in dead 1 Jalan Mamanda 9 Oncology-Haematology DepartmentCAPD Continuous Ambulatory Peritoneal Dialysis 68000 Ampang 1, Jalan Pangkor CD Cardiac Death Selangor Darul Ehsan 10050 Penang CDA Congenital Dyserythropoeitic Anaemia Tel : ( 03)42702500 Ext : 4478 Tel : ( 04)2202189 Fax : ( 03)42702938 CF Counting Fingers Fax : ( 04)2262994 CHD Coronary Heart Disease CKD Chronic Kidney Disease CMV Cytomegalovirus Lam Wah Ee Hospital Sime Darby Medical Centre SubangCRF Jaya Case Report Form Oncology-Haematology Department Haematology Department Dec December Jalan Tan Sri Teh Ewe Lim 1, Jalan SS 12/1A DF Deep Frozen 11600 Penang 47500 Subang Jaya DFS Disease-free Survival Tel : ( 04)6528836 Selangor Darul Ehsan FD Freeze Dried Fax : ( 04)6570940 Tel : ( 03)56391212 Feb February Fax : ( 03)56391209 FK506 Tacrolimus GCT Germ Cell Tumour Sime Darby Medical Centre Subang Jaya GFR Glomerular Filtration Rate Paediatrics BMT Unit GMC Gleneagles Medical Centre 1, Jalan SS 12/1A GS Gentamicin and Streptomycin 47500 Subang Jaya GVHD Graft Versus Host Disease Selangor Darul Ehsan HA Hospital Ampang Tel : ( 03)56306361 Hb Haemoglobin Fax : ( 03)56306209 HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

188 185 Fifth Report of the APPENDIX D National TransplantFifth Report Registry of the 2008 National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Blood and Marrow Transplant Services APPENDIX C

GLOSSARYUNIVERSITY

AIIRB Angiotensin II Receptor Blocker ACEHospital UniversitiAngiotensin Kebangsaan Converting EnzymeHospital Universiti Sains Malaysia ADPKDMalaysia Autosomal Dominant PolycysticHaemapoietic Kidney Stem Disease Cell Transplant AGMaybank BMT CentreAntigen Unit ALLJalan Yaacob LatifAcute Lymphocytic LeukaemiaJalan Sultanah Zainab II ALPBandar Tun Razak,Alkaline Cheras Phosphatase 16150 Kota Bharu ALT56000 Kuala lumpurAlanine Transferase Kelantan Darul Naim AMLTel : ( 03)91455555Acute Ext Myelogenous : 6336 LeukaemiaTel : ( 09) 7663349 AprFax : ( 03)91738255April ASH Ampang Puteri Specialist Hospital ATG Anti-thymocyte globulin Aug August University of Malaya Medical Centre University of Malaya Medical Centre AVM Arterio-venous Malformation Division of Haematology Paediatric BMT Unit AZA Azathioprine Department of Medicine Department of Paediatrics BMI Body Mass Index Jalan Universiti Jalan Universiti BMT Blood and Marrow Transplantation 59100 Kuala Lumpur 59100 Kuala Lumpur BPTel : ( 03)79492741Blood Pressure Tel : ( 03)79492065 BDFax : ( 03)79557740Brain Death Fax : ( 03)79556114 BID brought in dead CAPD Continuous Ambulatory Peritoneal Dialysis CD Cardiac Death CDA Congenital Dyserythropoeitic Anaemia CF Counting Fingers CHD Coronary Heart Disease CKD Chronic Kidney Disease CMV Cytomegalovirus CRF Case Report Form Dec December DF Deep Frozen DFS Disease-free Survival FD Freeze Dried Feb February FK506 Tacrolimus GCT Germ Cell Tumour GFR Glomerular Filtration Rate GMC Gleneagles Medical Centre GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

189 185 Fifth Report of the NationalFifth Transplant Report of Registrythe 2008 APPENDIX D National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Bone and Tissue Transplant Services APPENDIX C

GLOSSARY MOH AIIRB Angiotensin II Receptor Blocker Hospital Ipoh Hospital Kajang ACE Angiotensin Converting Enzyme Department of Orthopaedics Orthopaedics Department ADPKD Autosomal Dominant Polycystic Kidney Disease Jalan Hospital Jalan Semenyih AG Antigen 30990 Ipoh 43000 Kajang ALL Acute Lymphocytic Leukaemia Perak Darul Ridzuan Selangor Darul Ehsan ALP Alkaline Phosphatase Tel : ( 05)5222460 Tel : ( 03)87363333 ALT Alanine Transferase Fax : ( 05)2412826 AML Acute Myelogenous Leukaemia Apr April Hospital Kangar Hospital Kuala Lumpur ASH Ampang Puteri Specialist Hospital Jabatan Ortopedik & Traumatologi Institute of Orthopaedic & ATG Anti-thymocyte globulin Jalan Kolam Traumatology Aug August 01000 Kangar Jalan Pahang AVM Arterio-venous Malformation Perlis Indera Kayangan 50586 Kuala Lumpur AZA Azathioprine Tel : ( 04)9763333 Ext : 1184 Tel : ( 03)26155555 Ext : 5543/5534BMI Body Mass Index Fax : ( 04)9767237 Fax : ( 03)26927281 BMT Blood and Marrow Transplantation BP Blood Pressure Hospital Kuala Lumpur Hospital Kuantan BD Brain Death Ophthalmology Department Department of Orthopaedics BID brought in dead Jalan Pahang Jalan Tanah Puteh CAPD Continuous Ambulatory Peritoneal Dialysis 50586 Kuala Lumpur 25100 Kuantan CD Cardiac Death Tel : ( 03)26155555 Ext : 6801 Pahang Darul Makmur CDA Congenital Dyserythropoeitic Anaemia Fax : ( 03)26925276 Tel : ( 09)5133333 Ext : 2903CF Counting Fingers Fax : ( 09)5142712 CHD Coronary Heart Disease CKD Chronic Kidney Disease Hospital Pakar Sultanah Fatimah Hospital Pulau Pinang CMV Cytomegalovirus Orthopaedics Department Department of Orthopaedics CRF Case Report Form Jalan Salleh Jalan Residensi Dec December 84000 Muar 10990 Pulau Pinang DF Deep Frozen Johor Darul Takzim Tel : ( 04)2225127 DFS Disease-free Survival Tel : ( 06)9521901 Fax : ( 04)2226127 FD Freeze Dried Feb February Hospital Raja Perempuan Zainab II Hospital Raja Perempuan ZainabFK506 II Tacrolimus Department of Surgery Department of Orthopaedics GCT Germ Cell Tumour Jalan Hospital Jalan Hospital GFR Glomerular Filtration Rate 15590 Kota Bharu 15590 Kota Bharu GMC Gleneagles Medical Centre Kelantan Darul Naim Kelantan Darul Naim GS Gentamicin and Streptomycin Tel : ( 09)7452000 Ext : 2013/2237 Tel : ( 09)7485533 Ext : 2374/2364GVHD Graft Versus Host Disease Fax : ( 09) 7475418 Fax : ( 09)7486951 HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

190 185 Fifth Report of the APPENDIX D National TransplantFifth Report Registry of the 2008 National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Bone and Tissue Transplant Services APPENDIX C

GLOSSARYMOH

AIIRBHospital Seberang Angiotensin Jaya II Receptor BlockerHospital Sultanah Aminah ACEOrthopaedics DepartmentAngiotensin Converting EnzymeOrthopaedics Department ADPKDBandar Baru Autosomal Dominant Polycystic80100 Johor Kidney Bahru Disease AG13700 Seberang JayaAntigen Johor Darul Takzim ALLPulau Pinang Acute Lymphocytic LeukaemiaTel : ( 07)2231666 ALPTel : ( 04)3983333Alkaline Phosphatase ALT Alanine Transferase AMLHospital Sultanah AcuteBahiyah Myelogenous LeukaemiaHospital Sultanah Bahiyah AprOphthalmology DepartmentApril Department of Orthopaedic Surgery ASH06550 Alor Setar Ampang Puteri Specialist06550 Hospital Alor Setar ATGKedah Darul AmanAnti-thymocyte globulin Kedah Darul Aman AugTel : ( 04)7002248August Tel : ( 04)7303333 Ext : 179 AVMFax : ( 04)7323770Arterio-venous MalformationFax : ( 04)7323770 AZA Azathioprine BMIHospital Sultanah BodyNur Zahirah Mass Index Hospital Sungai Buloh BMTOrthopaedic DepartmentBlood and Marrow TransplantationOphthalmology Department BPJalan Sultan MahmudBlood Pressure 47000 Sungai Buloh BD20400 Kuala TerengganuBrain Death Selangor Darul Ehsan BIDTerengganu Darulbrought Iman in dead Tel : ( 03)61561324 CAPDTel : ( 09)6212121 Continuous Ambulatory Peritoneal Dialysis CD Cardiac Death CDA Congenital Dyserythropoeitic Anaemia CFHospital Taiping Counting Fingers Hospital Teluk Intan CHDDepartment of OrthopaedicCoronary SurgeryHeart Disease Ophthalmology Department CKDJalan Taming SariChronic Kidney Disease Jalan Changkat Jong CMV34000 Taiping Cytomegalovirus 36000 Teluk Intan CRFPerak Darul RidzuanCase Report Form Perak Darul Ridzuan DecTel : ( 05)8408037December Tel :( 05)6213333 Ext : 1330 DFFax : ( 05)8073894Deep Frozen Fax : ( 05)6237343 DFS Disease-free Survival FDHospital Tengku AmpuanFreeze Dried Afzan Hospital Tengku Ampuan Rahimah FebOphthalmology DepartmentFebruary Ophthalmology Department FK50625100 Kuantan Tacrolimus 41200 Klang GCTPahang Darul MakmurGerm Cell Tumour Selangor Darul Ehsan GFRTel : ( 09)5133333Glomerular Ext : 2454 Filtration RateTel : ( 03)33723333 Ext : 1336 GMCFax : ( 09)5142712Gleneagles Medical CentreFax : ( 03)33729089 GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

191 185 Fifth Report of the NationalFifth Transplant Report of Registry the 2008 APPENDIX D National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Bone and Tissue Transplant Services APPENDIX C

MOH GLOSSARY

AIIRB Angiotensin II Receptor Blocker Hospital Tengku Ampuan Rahimah Hospital Umum Sarawak Orthopaedic Clinic Orthopaedic Department ACE Angiotensin Converting Enzyme 41200 Klang 93586 Kuching ADPKD Autosomal Dominant Polycystic Kidney Disease Selangor Darul Ehsan Sarawak AG Antigen Tel : ( 03)33723333 Ext : 1225 Tel : (082)276433 ALL Acute Lymphocytic Leukaemia Fax : ( 03)33729089 Fax : (082)419495 ALP Alkaline Phosphatase ALT Alanine Transferase AML Acute Myelogenous Leukaemia PRIVATE Apr April ASH Ampang Puteri Specialist Hospital ATG Anti-thymocyte globulin Hospital Fatimah Island Hospital Aug August 1, Jalan Chew Peng Loon 308, Macalister Road AVM Arterio-venous Malformation Ipoh Garden 10450 Penang AZA Azathioprine 31400 Ipoh Pulau Pinang BMI Body Mass Index Perak Darul Ridzuan Tel : ( 04)2205527 BMT Blood and Marrow Transplantation Tel : ( 05)5455777 Fax : ( 04)2267989 BP Blood Pressure Fax : ( 05)5477050 BD Brain Death Kota Bharu Medical Centre Normah Medical Specialist CentreBID brought in dead Lot 179-184, Section 24 P.O Box 3298 CAPD Continuous Ambulatory Peritoneal Dialysis Jalan Sultan Yahya Petra 93764 Kuching CD Cardiac Death 15200 Lundang, Kota Bharu Sarawak CDA Congenital Dyserythropoeitic Anaemia Kelantan Darul Naim Tel : (082)440055 CF Counting Fingers Tel : ( 09)7433399 Fax : (082)442600 CHD Coronary Heart Disease Fax : ( 09)7433800 CKD Chronic Kidney Disease CMV Cytomegalovirus Seremban Specialist Hospital Sri Kota Medical Centre CRF Case Report Form Wan Orthopaedic, Trauma & Sports Ophthalmology Department Dec December Injury Centre (WOTSIC) Jalan Mohet DF Deep Frozen Suite 17, Seremban Specialist Hospital, 41000 Klang DFS Disease-free Survival Jalan Toman 1, Kemayan Square Selangor Darul Ehsan FD Freeze Dried 70200 Seremban Tel : ( 03)33733636 Feb February Negeri Sembilan Darul Khusus Fax : ( 03)33736888 FK506 Tacrolimus Tel : ( 06)7677800 Ext : 130 / 131 GCT Germ Cell Tumour Fax : ( 06)7675900 GFR Glomerular Filtration Rate GMC Gleneagles Medical Centre Timberland Medical Centre GS Gentamicin and Streptomycin Lorong 2, 2 1/2 miles Rock Road GVHD Graft Versus Host Disease 93250 Kuching HA Hospital Ampang Sarawak Hb Haemoglobin Tel : (082)234466 Ext : 503 HbsAg Hepatitis B surface Antigen Fax : (082)232259 HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

192 185 Fifth Report of the APPENDIX D National TransplantFifth Report Registry of the 2008 National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Bone and Tissue Transplant Services APPENDIX C

GLOSSARYUNIVERSITY

AIIRB Angiotensin II Receptor Blocker Hospital Universiti Sains Malaysia Hospital Universiti Sains Malaysia ACE Angiotensin Converting Enzyme Ophthalmology Department Orthopaedics Department ADPKD16150 Kubang Kerian Autosomal Dominant Polycystic16150 Kota Kidney Bharu Disease AGKelantan Darul NaimAntigen Kelantan Darul Naim ALLTel : ( 09)7664370Acute Lymphocytic LeukaemiaTel : ( 09) 7664509 ALPFax : (09)7653370Alkaline Phosphatase Fax : ( 09) 7653370 ALT Alanine Transferase AML Acute Myelogenous Leukaemia AprInternational IslamicApril University University of Malaya Medical Centre ASHMalaysia Ampang Puteri SpecialistDepartment Hospital of Orthopaedics Surgery ATGDepartment of Orthopaedics,Anti-thymocyte globulin Jalan Universiti AugTraumatology andAugust Rehabilitation 59100 Kuala Lumpur AVMKulliyah of MedicineArterio-venous MalformationTel : ( 03)79492061 AZAJalan Hospital Azathioprine Fax : ( 03)79535642 BMI25100 Kuantan Body Mass Index BMTPahang Darul MakmurBlood and Marrow Transplantation BPTel : ( 09)5132797Blood Pressure BDFax : ( 09)5151518Brain Death BID brought in dead CAPDTISSUE BANK Continuous Ambulatory Peritoneal Dialysis CD Cardiac Death CDANational Tissue BankCongenital Dyserythropoeitic Anaemia CFUniversiti Sains MalaysiaCounting Fingers CHDHealth Campus Coronary Heart Disease CKD16150 Kota BharuChronic Kidney Disease CMVKelantan Darul NaimCytomegalovirus CRFTel : ( 09)7664344Case Report Form DecFax : ( 09)7653307December DF Deep Frozen DFS Disease-free Survival FD Freeze Dried Feb February FK506 Tacrolimus GCT Germ Cell Tumour GFR Glomerular Filtration Rate GMC Gleneagles Medical Centre GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

193 185 Fifth Report of the NationalFifth Transplant Report of Registrythe 2008 APPENDIX D National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Bone and Tissue Transplant Services APPENDIX C

BONE BANK GLOSSARY

AIIRB Angiotensin II Receptor Blocker Bone Bank, Hospital Kuala Lumpur Bone Bank, University of Malaya ACE Angiotensin Converting Enzyme Institute of Orthopaedic & Medical Centre ADPKD Autosomal Dominant Polycystic Kidney Disease Traumatology Department of Orthopaedics Surgery Jalan Pahang Jalan Universiti AG Antigen 50586 Kuala Lumpur 59100 Kuala Lumpur ALL Acute Lymphocytic Leukaemia Tel : ( 03)26155555 Ext : 5543/5534 Tel : ( 03)79492061 ALP Alkaline Phosphatase Fax : ( 03)26927281 Fax : ( 03)79535642 ALT Alanine Transferase AML Acute Myelogenous Leukaemia Apr April ASH Ampang Puteri Specialist Hospital IRRADIATION CENTRE ATG Anti-thymocyte globulin Aug August Malaysian Nuclear Agency AVM Arterio-venous Malformation Research Tissue Bank AZA Azathioprine Nuclear Agensi Malaysia BMI Body Mass Index Bangi BMT Blood and Marrow Transplantation 43000 Kajang BP Blood Pressure Selangor Darul Ehsan BD Brain Death Tel : ( 03) 89250510 Ext : 1611 BID brought in dead Fax : ( 03) 89282956 CAPD Continuous Ambulatory Peritoneal Dialysis CD Cardiac Death CDA Congenital Dyserythropoeitic Anaemia CF Counting Fingers CHD Coronary Heart Disease CKD Chronic Kidney Disease CMV Cytomegalovirus CRF Case Report Form Dec December DF Deep Frozen DFS Disease-free Survival FD Freeze Dried Feb February FK506 Tacrolimus GCT Germ Cell Tumour GFR Glomerular Filtration Rate GMC Gleneagles Medical Centre GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

194 185 Fifth Report of the APPENDIX D National TransplantFifth Report Registry of the 2008 National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Cornea Transplant Services APPENDIX C

GLOSSARYMOH

AIIRB Angiotensin II Receptor Blocker Hospital Batu Pahat Hospital Bukit Mertajam ACEOphthalmology DepartmentAngiotensin Converting EnzymeOphthalmology Department ADPKD83000 Batu Pahat Autosomal Dominant PolycysticJalan Kulim Kidney Disease AGJohor Darul TakzimAntigen 14000 Bukit Mertajam ALLTel : ( 07)4341999Acute Lymphocytic LeukaemiaPulau Pinang ALPFax : ( 07)4322544Alkaline Phosphatase Tel : ( 04)5383333 Ext : 256 / 259 ALT Alanine Transferase Fax : ( 04)5388435 AML Acute Myelogenous Leukaemia AprHospital Duchess ofApril Kent Hospital Ipoh ASHOphthalmology DepartmentAmpang Puteri SpecialistOphthalmology Hospital Department ATGKM 3.2 Jalan UtaraAnti-thymocyte globulin Jalan Hospital Aug90000 Sandakan August 30990 Ipoh AVMSabah Arterio-venous MalformationPerak Darul Ridzuan AZATel : (089)212111 Azathioprine Tel : ( 05)5222034 BMIFax : (089)213607Body Mass Index Fax : ( 05)2531541 BMT Blood and Marrow Transplantation BPHospital Kangar Blood Pressure Hospital Kuala Lipis BDOphthalmology DepartmentBrain Death Ophthalmology Department BIDJalan Kolam brought in dead 27200 Kuala Lipis CAPD01000 Kangar Continuous Ambulatory PeritonealPahang Darul Dialysis Makmur CDPerlis Indera KayanganCardiac Death Tel : ( 09)3123333 Ext : 114 CDATel : ( 04)9763333Congenital Ext : 2031 Dyserythropoeitic Fax : Anaemia( 09)3121787 CFFax : ( 04)9767237Counting Fingers CHD Coronary Heart Disease CKDHospital Kuala LumpurChronic Kidney Disease Hospital Kuala Pilah CMVOphthalmology DepartmentCytomegalovirus Ophthalmology Department CRFJalan Pahang Case Report Form 72000 Kuala Pilah Dec50586 Kuala LumpurDecember Negeri Sembilan Darul Khusus DFTel : ( 03)26155555Deep FrozenExt : 6801 Tel : ( 06)4818001 Ext : 170 / 175 DFSFax : ( 03)26925276Disease-free Survival Fax : ( 06)4818010 FD Freeze Dried Feb February FK506Hospital Melaka Tacrolimus Hospital Mentakab GCTOphthalmology DepartmentGerm Cell Tumour Ophthalmology Department GFRJalan Mufti Haji KhalilGlomerular Filtration RateJalan Maran GMC75400 Melaka Gleneagles Medical Centre28900 Temerloh GSMelaka Gentamicin and StreptomycinPahang Darul Makmur GVHDTel : ( 06)2707215 Graft Versus Host DiseaseTel : ( 09)2955333 Ext : 1570 HAFax : ( 06)2818488Hospital Ampang Fax : ( 09)2972468 Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

195 185 Fifth Report of the NationalFifth Transplant Report of Registry the 2008 APPENDIX D National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Cornea Transplant Services APPENDIX C

MOH GLOSSARY

AIIRB Angiotensin II Receptor Blocker Hospital Miri Hospital Pakar Sultanah FatimahACE Angiotensin Converting Enzyme Ophthalmology Department Ophthalmology Department ADPKD Autosomal Dominant Polycystic Kidney Disease Jalan Cahaya Jalan Salleh AG Antigen 98000 Miri 84000 Muar ALL Acute Lymphocytic Leukaemia Sarawak Johor Darul Takzim ALP Alkaline Phosphatase Tel : (085)420033 Ext : 148 Tel : ( 07)9521901 Ext : 147ALT / 227 Alanine Transferase Fax : (085)416514 AML Acute Myelogenous Leukaemia Hospital Putrajaya Apr April Hospital Pulau Pinang Ophthalmology Department ASH Ampang Puteri Specialist Hospital Eye Clinic Pusat Pentadbiran Kerajaan ATG Anti-thymocyte globulin Jalan Residensi Persekutuan Presint 7 Aug August 10990 Georgetown 62250 Putra Jaya AVM Arterio-venous Malformation Pulau Pinang Selangor Darul Ehsan AZA Azathioprine Tel : ( 04)2002283 Tel : ( 03)83124200 Ext : 4231/4279BMI Body Mass Index Fax : ( 04)2281737 Fax : ( 03)88880137 BMT Blood and Marrow Transplantation BP Blood Pressure Hospital Queen Elizabeth Hospital Raja Perempuan ZainabBD II Brain Death Ophthalmology Department Ophthalmology Department BID brought in dead 88586 Kota Kinabalu Jalan Hospital CAPD Continuous Ambulatory Peritoneal Dialysis Sabah 15586 Kota Bharu CD Cardiac Death Tel : (088)206153 Kelantan Darul Naim CDA Congenital Dyserythropoeitic Anaemia Fax : (088)252827 Tel : ( 09)7485533 Ext : 2254CF Counting Fingers Fax : ( 09)7502236 CHD Coronary Heart Disease CKD Chronic Kidney Disease Hospital Selayang Hospital Sibu CMV Cytomegalovirus Ophthalmology Department Ophthalmology Department CRF Case Report Form Lebuhraya Selayang-Kepong Batu 5 1/2 Jalan Ulu Oya Dec December Batu Caves 96000 Sibu DF Deep Frozen 68100 Bandar Baru Selayang Sarawak DFS Disease-free Survival Selangor Darul Ehsan Tel : (084)343333 Ext : 1008/1009FD Freeze Dried Tel : ( 03)61367788 Ext : 4069/3254 Fax : (084)337354 Feb February Fax : ( 03)61207564 FK506 Tacrolimus GCT Germ Cell Tumour Hospital Sultan Ismail Hospital Sultanah Aminah GFR Glomerular Filtration Rate Ophthalmology Department Ophthalmology Department GMC Gleneagles Medical Centre Jalan Persiaran Mutiara Emas Utama 80100 Johor Bahru GS Gentamicin and Streptomycin 81100 Johor Bahru Johor Darul Takzim GVHD Graft Versus Host Disease Johor Darul Takzim Tel : ( 07)2231666 Ext : 2690HA Hospital Ampang Tel : ( 07)3565000 Fax : ( 07)2242694 Hb Haemoglobin Fax : ( 07)3565034 HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

196 185 Fifth Report of the APPENDIX D National TransplantFifth Report Registry of the 2008 National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Cornea Transplant Services APPENDIX C

GLOSSARYMOH

AIIRBHospital Sultanah AngiotensinBahiyah II Receptor BlockerHospital Sultanah Nur Zahirah ACEOphthalmology DepartmentAngiotensin Converting EnzymeOphthalmology Department ADPKD05460 Alor Setar Autosomal Dominant PolycysticJalan Sultan Kidney Mahmud Disease AGKedah Darul AmanAntigen 20400 Kuala Terengganu ALLTel : ( 04)7407873Acute Lymphocytic LeukaemiaTerengganu Darul Iman ALPFax : ( 04)7406154Alkaline Phosphatase Tel : ( 09)6212121 Ext : 2727/2024 ALT Alanine Transferase Fax : ( 09)6317871 AML Acute Myelogenous Leukaemia AprHospital Sungai BulohApril Hospital Sungai Petani ASHOphthalmology DepartmentAmpang Puteri SpecialistOphthalmology Hospital Department ATGJalan Hospital Anti-thymocyte globulin 08000 Sungai Petani Aug47000 Sungai BulohAugust Kedah Darul Aman AVMSelangor Darul EhsanArterio-venous MalformationTel : ( 04)4213333 Ext : 127 AZATel : ( 03)61561324Azathioprine Fax : ( 04)4212403 BMIFax : ( 03)61562470Body Mass Index BMT Blood and Marrow Transplantation BPHospital Taiping Blood Pressure Hospital Tawau BDOphthalmology DepartmentBrain Death Ophthalmology Department BIDJalan Taming Sari brought in dead P.O. Box 67 CAPD34000 Taiping Continuous Ambulatory Peritoneal91007 Tawau Dialysis CDPerak Darul RidzuanCardiac Death Sabah CDATel : ( 05)8083333Congenital Ext : 8050/8053 Dyserythropoeitic Tel : Anaemia(089)773533 Ext : 179 CFFax : ( 05)8073894Counting Fingers Fax : (089)768626 CHD Coronary Heart Disease CKDHospital Teluk IntanChronic Kidney Disease Hospital Tengku Ampuan Afzan CMVOphthalmology DepartmentCytomegalovirus Ophthalmology Department CRFJalan Changkat JongCase Report Form 25100 Kuantan Dec36000 Teluk IntanDecember Pahang Darul Makmur DFPerak Darul RidzuanDeep Frozen Tel : ( 09)5133333 Ext : 2454 DFSTel : ( 05)6213333Disease-free Ext : 1330 Survival Fax : ( 09)5142712 FDFax : ( 05)6237343Freeze Dried Feb February FK506Hospital Tengku Ampuan Tacrolimus Rahimah Hospital Tuanku Ja'afar GCTOphthalmology DepartmentGerm Cell Tumour Ophthalmology Department GFRJalan Langat Glomerular Filtration RateJalan Rasah GMC41200 Klang Gleneagles Medical Centre70300 Seremban GSSelangor Darul EhsanGentamicin and StreptomycinNegeri Sembilan Darul Khusus GVHDTel : ( 03)33723333 Graft Ext Versus : 1336/1338 Host Disease Tel : ( 06)7623333 Ext : 5120 HAFax : ( 03)33729089Hospital Ampang Fax : ( 06)7625771 Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

197 185 Fifth Report of the NationalFifth Transplant Report of Registry the 2008 APPENDIX D National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Cornea Transplant Services APPENDIX C

MOH GLOSSARY

Hospital Umum Sarawak AIIRB Angiotensin II Receptor Blocker Opthalmology Department ACE Angiotensin Converting Enzyme Jalan Tun Ahmad Zaidi Adruce ADPKD Autosomal Dominant Polycystic Kidney Disease 93586 Kuching AG Antigen Sarawak ALL Acute Lymphocytic Leukaemia Tel : (082)276513 ALP Alkaline Phosphatase Fax : (082)419495 ALT Alanine Transferase AML Acute Myelogenous Leukaemia Apr April ARMED FORCES ASH Ampang Puteri Specialist Hospital ATG Anti-thymocyte globulin Aug August 94 Hospital Angkatan Tentera Kem AVM Arterio-venous Malformation Terendak AZA Azathioprine Ophthalmology Department BMI Body Mass Index 76200 Melaka BMT Blood and Marrow Transplantation Melaka BP Blood Pressure Tel : ( 06)3573201 Ext : 1134/1127 BD Brain Death Fax : ( 06)3572108 BID brought in dead CAPD Continuous Ambulatory Peritoneal Dialysis CD Cardiac Death PRIVATE CDA Congenital Dyserythropoeitic Anaemia CF Counting Fingers International Specialist Eye Centre Gleneagles Intan Medical CentreCHD Coronary Heart Disease Level 8, Centrepoint South, Hope Eye Centre CKD Chronic Kidney Disease The Boulevard, Midvalley City Suite 618 CMV Cytomegalovirus Lingkaran Syed Putra 282, Jalan Ampang CRF Case Report Form 59200 Kuala Lumpur 50450 Kuala Lumpur Dec December Tel : ( 03)22848989 Tel : ( 03)42578112 DF Deep Frozen Fax : ( 03)22844330 Fax : ( 03)42576112 DFS Disease-free Survival FD Freeze Dried Feb February Gleneagles Medical Centre Hospital Pantai Indah FK506 Tacrolimus Ophthalmology Department Ophthalmology Department GCT Germ Cell Tumour Pulau Pinang Clinic Sdn Bhd Jalan Perubatan 1 GFR Glomerular Filtration Rate 1, Jalan Pangkor Pandan Indah GMC Gleneagles Medical Centre 10050 Pulau Pinang 55100 Kuala Lumpur GS Gentamicin and Streptomycin Tel : ( 04)2202147 Tel : ( 03)42892947 GVHD Graft Versus Host Disease Fax : ( 04)2272498 HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

198 185 Fifth Report of the APPENDIX D National TransplantFifth Report Registry of the 2008 National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Cornea Transplant Services APPENDIX C

GLOSSARYPRIVATE

AIIRBK. C. Yeo Eye Specialist Angiotensin Centre II Receptor BlockerMahkota Medical Centre ACENo. 309-310, JalanAngiotensin Melaka Raya Converting 1 EnzymeSuite 101, 1st Floor, ADPKDTmn Melaka Raya Autosomal Dominant Polycystic3, Mahkota Kidney Melaka, Disease Jalan Merdeka AG75000 Melaka Antigen 75000 Melaka ALLTel : ( 06)2833510Acute Lymphocytic LeukaemiaTel : ( 06)2818222 ALP Alkaline Phosphatase ALT Alanine Transferase AML Acute Myelogenous Leukaemia AprPusat Pakar Mata CentreApril For Sight Puteri Specialist Hospital, JB ASH1-1, Jalan SS23/15,Ampang Puteri Specialist33, Hospital Jalan Tun Abdul Razak (Susur 5) ATGTaman SEA Anti-thymocyte globulin 80350 Johor Bahru Aug47400 Petaling JayaAugust Johor Darul Takzim AVMSelangor Darul EhsanArterio-venous Malformation( 07)2233377 AZATel : ( 03)78044051Azathioprine ( 07)2238833 BMI Body Mass Index BMT Blood and Marrow Transplantation BPSri Kota Medical CentreBlood Pressure Sunway Medical Centre BDOphthalmology DepartmentBrain Death No 5, Jln Lagoon Selatan BIDJalan Mohet brought in dead Bandar Sunway CAPD41000 Klang Continuous Ambulatory Peritoneal46150 Petaling Dialysis Jaya CDSelangor Darul EhsanCardiac Death Selangor Darul Ehsan CDATel : ( 03)33733636Congenital Ext : 7206 Dyserythropoeitic Tel : Anaemia( 03)74919191 Ext : 6612/6613 CFFax : ( 03)33736888Counting Fingers CHD Coronary Heart Disease CKDTan Eye SpecialistChronic Centre Kidney Disease Tun Hussein Onn National Eye CMVSunway Medical CentreCytomegalovirus Hospital CRFNo 5, Jln Lagoon SelatanCase Report Form Lorong Utara B DecBandar Sunway December 46200 Petaling Jaya DF46150 Petaling JayaDeep Frozen Selangor Darul Ehsan DFSSelangor Darul EhsanDisease-free Survival Tel : ( 03)79561511 FDTel : ( 03)74919191Freeze Ext Dried : 1602 Fax : ( 03)79576128 FebFax : ( 03)79826025February FK506 Tacrolimus GCT Germ Cell Tumour GFR Glomerular Filtration Rate GMC Gleneagles Medical Centre GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

199 185 Fifth Report of the NationalFifth Transplant Report of Registry the 2008 APPENDIX D National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Cornea Transplant Services APPENDIX C

UNIVERSITY GLOSSARY

Hospital Universiti Kebangsaan Hospital Universiti Sains MalaysiaAIIRB Angiotensin II Receptor Blocker Malaysia Ophthalmology Department ACE Angiotensin Converting Enzyme Ophthalmology Department 16150 Kubang Kerian ADPKD Autosomal Dominant Polycystic Kidney Disease Faculty of Medicine Kelantan Darul Naim AG Antigen Jalan Yaacob Latif Tel : ( 09)7664370 ALL Acute Lymphocytic Leukaemia Bandar Tun Razak, Cheras Fax : ( 09)7653370 ALP Alkaline Phosphatase 56000 Kuala lumpur ALT Alanine Transferase Tel : ( 03)91702497 AML Acute Myelogenous Leukaemia Fax : ( 03)91737836 Apr April ASH Ampang Puteri Specialist Hospital ATG Anti-thymocyte globulin Aug August University of Malaya Medical Centre AVM Arterio-venous Malformation Ophthalmology Department AZA Azathioprine Faculty of Medicine BMI Body Mass Index 59100 Kuala Lumpur BMT Blood and Marrow Transplantation Tel : ( 03) 79502060 BP Blood Pressure Fax : ( 03) 79535635 BD Brain Death BID brought in dead CAPD Continuous Ambulatory Peritoneal Dialysis CD Cardiac Death CDA Congenital Dyserythropoeitic Anaemia CF Counting Fingers CHD Coronary Heart Disease CKD Chronic Kidney Disease CMV Cytomegalovirus CRF Case Report Form Dec December DF Deep Frozen DFS Disease-free Survival FD Freeze Dried Feb February FK506 Tacrolimus GCT Germ Cell Tumour GFR Glomerular Filtration Rate GMC Gleneagles Medical Centre GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

200 185 Fifth Report of the APPENDIX D National TransplantFifth Report Registry of the 2008 National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Heart and Lung Transplant Services APPENDIX C

GLOSSARYMOH

AIIRBHospital Kuala Lumpur Angiotensin II Receptor BlockerInstitute Jantung Negara ACEInstitut Perubatan AngiotensinRespiratori Converting EnzymeCardiothoracic Department ADPKDJalan Pahang Autosomal Dominant Polycystic145, Jalan Kidney Tun Razak Disease AG50586 Kuala LumpurAntigen 50400 Kuala Lumpur ALLTel : ( 03)40232966Acute Lymphocytic LeukaemiaTel : ( 03)26178200 ALPFax : ( 03)40218807Alkaline Phosphatase Fax : ( 03)26928418 ALT Alanine Transferase AML Acute Myelogenous Leukaemia Apr April ASHHeart Valve TransplantAmpang Puteri Services Specialist Hospital ATG Anti-thymocyte globulin Aug August AVMMOH Arterio-venous Malformation AZA Azathioprine BMIInstitute Jantung NegaraBody Mass Index BMTCardiovascular TissueBlood Bank and Marrow Transplantation BPDepartment Of CardiothoracicBlood Pressure Surgery BD145, Jalan Tun RazakBrain Death BID50400 Kuala Lumpurbrought in dead CAPDTel : ( 03)2617 8200 Continuous Ambulatory Peritoneal Dialysis CDFax : ( 03)2692 8418Cardiac Death CDA Congenital Dyserythropoeitic Anaemia CF Counting Fingers CHD Coronary Heart Disease CKD Chronic Kidney Disease CMV Cytomegalovirus CRF Case Report Form Dec December DF Deep Frozen DFS Disease-free Survival FD Freeze Dried Feb February FK506 Tacrolimus GCT Germ Cell Tumour GFR Glomerular Filtration Rate GMC Gleneagles Medical Centre GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

201 185 Fifth Report of the NationalFifth Transplant Report of Registry the 2008 APPENDIX D National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Kidney Transplant Services APPENDIX C GLOSSARY MOH AIIRB Angiotensin II Receptor Blocker Hospital Batu Pahat Hospital Bintulu ACE Angiotensin Converting Enzyme Renal Transplant Clinic Renal Transplant Clinic ADPKD Autosomal Dominant Polycystic Kidney Disease c/o Haemodialysis Unit c/o Haemodialysis Unit AG Antigen 83000 Batu Pahat Jalan Nyabau ALL Acute Lymphocytic Leukaemia Johor Darul Takzim 97000 Bintulu ALP Alkaline Phosphatase Tel 1 : ( 07)4341999 Ext : 149 Sarawak ALT Alanine Transferase Tel 2 : ( 07)4340654 Tel 1 : (086)255899 AML Acute Myelogenous Leukaemia Fax : ( 07)4322544 Tel 2 : (086)311416 Apr April Fax : (086)255866 ASH Ampang Puteri Specialist Hospital ATG Anti-thymocyte globulin Hospital Duchess of Kent Aug August Renal Transplant Clinic Hospital Dungun AVM Arterio-venous Malformation c/o Haemodialysis Unit Renal Transplant Clinic AZA Azathioprine KM3.2, Jalan Utara c/o Haemodialysis Unit BMI Body Mass Index 90007 Sandakan 23000 Dungun BMT Blood and Marrow Transplantation Sabah Terengganu Darul Iman BP Blood Pressure Tel 1 : (089)212111 Ext : 5190 Tel : ( 09)8483333 Ext : 261 BD Brain Death Tel 2 : (089)212739 Fax : ( 09)8484160 BID brought in dead Fax : (089)213607 CAPD Continuous Ambulatory Peritoneal Dialysis Hospital Kluang CD Cardiac Death Hospital Kemaman Renal Transplant Clinic CDA Congenital Dyserythropoeitic Anaemia Renal Transplant Clinic c/o Haemodialysis Unit CF Counting Fingers c/o Haemodialysis Unit Jalan Hospital CHD Coronary Heart Disease 24000 Kemaman 88000 Kluang CKD Chronic Kidney Disease Terengganu Darul Iman Johor Darul Takzim CMV Cytomegalovirus Tel : ( 09)8593333 Ext : 2012 Tel 1 : ( 07)7723333 Ext : 266CRF / 313 Case Report Form Fax : ( 09)8595512 Tel 2 : ( 07)7723334 Dec December Fax : ( 07)7734498 DF Deep Frozen DFS Disease-free Survival Hospital Kuala Lumpur (Paed Tx Unit) Hospital Kuala Lumpur FD Freeze Dried Nephrology Clinic (Renal Transplant) Nephrology Clinic (Renal Transplant)Feb February Department of Nephrology Department of Nephrology FK506 Tacrolimus Jalan Pahang Jalan Pahang GCT Germ Cell Tumour 50586 Kuala Lumpur 50586 Kuala Lumpur GFR Glomerular Filtration Rate Tel : ( 03)26921044 Ext : 6021 Tel 1 : ( 03)26155555 Ext :GMC 5910 Gleneagles Medical Centre Fax : ( 03)26948187 Tel 2 : ( 03)26157561 GS Gentamicin and Streptomycin Fax : ( 03)26938953 GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

202 185 Fifth Report of the APPENDIX D National TransplantFifth Report Registry of the 2008 National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Kidney Transplant Services APPENDIX C

GLOSSARYMOH

AIIRBHospital Labuan Angiotensin II Receptor BlockerHospital Likas ACERenal Transplant ClinicAngiotensin Converting EnzymeRenal Transplant Clinic ADPKDc/o Haemodialysis Autosomal Unit Dominant Polycysticc/o Haemodialysis Kidney Disease Unit AG87020 Labuan Antigen 88996 Kota Kinabalu ALLSabah Acute Lymphocytic LeukaemiaSabah ALPTel 1 : (087)423919Alkaline Ext :Phosphatase 274 Tel : (088)522600 Ext : 723 / 714 ALTTel 2 : (087)410761Alanine Transferase Fax : (088)438512 AMLFax : (087)423928Acute Myelogenous Leukaemia Apr April ASHHospital Melaka Ampang Puteri SpecialistH Hospitalospital Mersing ATGRenal Transplant ClinicAnti-thymocyte globulin Renal Transplant Clinic Aug c/o HaemodialysisAugust Unit c/o Haemodialysis Unit AVMTingkat Bawah, BlokArterio-venous D MalformationJalan Ismail AZAJalan Pringgit Azathioprine 86800 Mersing BMI70060 Melaka Body Mass Index Johor Darul Takzim BMTTel 1 : ( 06)2822344Blood and Marrow TransplantationTel 1 : ( 07)7993333 Ext : 126 BPTel 2 : ( 06)2707648Blood Pressure Tel 2 : ( 07)7991415 BDFax : ( 06)2837500Brain Death Fax : ( 07)7994200 BID brought in dead CAPDHospital Miri Continuous Ambulatory PeritonealHospital Pakar Dialysis Sultanah Fatimah CDRenal Transplant ClinicCardiac Death Renal Transplant Clinic CDAc/o Haemodialysis Congenital Unit Dyserythropoeiticc/o Haemodialysis Anaemia Unit CF98000 Miri Counting Fingers 84000 Muar CHDSarawa k Coronary Heart Disease Johor Darul Takzim CKDTel : (085)420033Chronic Ext : Kidney251 Disease Tel : ( 06)9521901 Ext : 116 CMVFax : (085)416514Cytomegalovirus Fax : ( 06)9526003 CRF Case Report Form Dec December DFHospital Pontian Deep Frozen Hospital Pulau Pinang DFSRenal Transplant ClinicDisease-free Survival Renal Transplant Clinic FDc/o HaemodialysisFreeze Unit Dried c/o Haemodialysis Unit FebJalan Alfagoff February Jalan Residensi FK50682000 Pontian Tacrolimus 10990 Georgetown GCTJohor Darul TakzimGerm Cell Tumour Pulau Pinang GFRTel 1 : ( 07)6873333Glomerular Ext : 202 Filtration RateTel : ( 04)2225333 Ext : 397 GMCTel 2 : ( 07)6874533Gleneagles Medical CentreFax : ( 04)2281737 GSFax : ( 07)6874533Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

203 185 Fifth Report of the National Transplant Registry 2008 APPENDIX D Fifth Report of the National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Kidney Transplant Services APPENDIX C

MOH GLOSSARY

AIIRB Angiotensin II Receptor Blocker Hospital Queen Elizabeth Hospital Raja Perempuan Zainab II Renal Transplant Clinic Renal Transplant Clinic ACE Angiotensin Converting Enzyme c/o CADP Unit c/o Haemodialysis Unit ADPKD Autosomal Dominant Polycystic Kidney Disease 88586 Kota Kinabalu 15590 Kota Bharu AG Antigen Sabah Kelantan Darul Naim ALL Acute Lymphocytic Leukaemia Tel : (088)218166 Ext : 284 Tel 1 : ( 09)7485533 ALP Alkaline Phosphatase Fax : (088)211999 Tel 2 : (09)7502801 ALT Alanine Transferase Fax : ( 09)7486951 AML Acute Myelogenous Leukaemia Apr April Hospital Segamat ASH Ampang Puteri Specialist Hospital Hospital Raja Permaisuri Bainun ATG Anti-thymocyte globulin Nephrology Clinic Renal Transplant Clinic Aug August Jalan Hospital c/o Haemodialysis Unit AVM Arterio-venous Malformation 30990 Ipoh 83500 Segamat AZA Azathioprine Perak Darul Ridzuan Johor Darul Takzim BMI Body Mass Index Tel : ( 05)5222372 Tel 1 : ( 07)9433333 Ext : 147 Fax : ( 05)2531541 Tel 2 : ( 07)9433334 BMT Blood and Marrow Transplantation Fax : ( 07)9434641 BP Blood Pressure BD Brain Death Hospital Selayang Hospital Serdang BID brought in dead Renal Transplant Clinic Renal Transplant Clinic CAPD Continuous Ambulatory Peritoneal Dialysis c/o Ward 7B c/o Haemodialysis Unit CD Cardiac Death Lebuhraya Selayang-Kepong Jalan Puchong CDA Congenital Dyserythropoeitic Anaemia 68100 Batu Caves 43000 Kajang CF Counting Fingers Selangor Darul Ehsan Selangor Darul Ehsan CHD Coronary Heart Disease Tel 1 : ( 03)61203233 Ext : 7007/7011 Tel 1 : ( 03)89475555 Ext : 1256 CKD Chronic Kidney Disease Tel 2 : ( 03)61380409 Tel 2 : ( 03)89475282 Fax : ( 03)61377097 Fax : ( 03)89455317 CMV Cytomegalovirus CRF Case Report Form Dec December Hospital Sibu Hospital Sultan Haji Ahmad ShahDF Deep Frozen Renal Transplant Clinic Renal Transplant Clinic DFS Disease-free Survival c/o Haemodialysis Unit c/o Haemodialysis Unit FD Freeze Dried 96000 Sibu Jalan Maran Feb February Sarawak 28000 Temerloh FK506 Tacrolimus Tel : (084)343333 Ext : 2102 Pahang Darul Makmur GCT Germ Cell Tumour Fax : (084)337354 Tel : ( 09)2955333 Ext : 1570GFR Glomerular Filtration Rate GMC Gleneagles Medical Centre GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein 204

185 Fifth Report of the APPENDIX D National Transplant Registry 2008 Fifth Report of the National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Kidney Transplant Services APPENDIX C

GLOSSARYMOH

AIIRB Angiotensin II Receptor Blocker Hospital Sultan Ismail Pandan Hospital Sultan Ismail Pandan ACE Angiotensin Converting Enzyme Renal Transplant Clinic (Paed) Renal Transplant Clinic ADPKD Autosomal Dominant Polycystic Kidney Disease c/o Paediatrics Ward (Wad 8C & D) c/o Haemodialysis Unit AG Antigen Jalan Persiaran Mutiara Emas Utama Jalan Persiaran Mutiara Emas Utama ALLTaman Mount AustiAcuten Lymphocytic LeukaemiaTaman Mount Austin ALP81100 Johor BahruAlkaline Phosphatase 81100 Johor Bahru ALTJohor Darul TakzimAlanine Transferase Johor Darul Takzim AMLTel : ( 07)3565000Acute Ext Myelogenous : 2013/8306 LeukaemiaTel : ( 07)3565000 Ext : 3508/3509 AprFax : ( 07)3565088April Fax : ( 07)3565034 ASH Ampang Puteri Specialist Hospital ATG Anti-thymocyte globulin AugHospital Sultanah AugustAminah Hospital Sultanah Bahiyah AVMRenal Transplant ClinicArterio-venous MalformationRenal Transplant Clinic AZAc/o Haemodialysis Azathioprine Unit c/o Haemodialysis Unit BMI80590 Johor BahruBody Mass Index 06550 Alor Setar BMTJohor Darul TakzimBlood and Marrow TransplantationKedah Darul Aman BPTel : ( 07)2231666Blood Ext Pressure : 2055 Tel : ( 04)7303333 Ext : 201/202 BDFax : ( 07)2242694Brain Death Fax : ( 04)7341737 BID brought in dead CAPD Continuous Ambulatory Peritoneal Dialysis CDHospital Sultanah CardiacNur Zahirah Death Hospital Taiping CDARenal Transplant ClinicCongenital DyserythropoeiticRenal Anaemia Transplant Clinic CFc/o HaemodialysisCounting Unit Fingers c/o Haemodialysis unit CHD20400 Kuala TerengganuCoronary Heart Disease Jalan Taming Sari CKDTerengganu Darul ChronicIman Kidney Disease 34000 Taiping CMVTel : ( 09)6212121Cytomegalovirus Ext : 2054 Perak Darul Ridzuan CRFFax : ( 09)6221820Case Report Form Tel 1 : ( 05)8083333 Ext : 8173 Dec December Tel 2 : ( 05)8408173 DF Deep Frozen Fax : ( 05)8053121 DFS Disease-free Survival FDHospital Tawau Freeze Dried Hospital Tengku Ampuan Afzan FebRenal Transplant ClinicFebruary Renal Transplant Clinic FK506c/o Haemodialysis Tacrolimus Unit c/o Haemodialysis Unit GCT91007 Tawau Germ Cell Tumour 25100 Kuantan GFRSabah Glomerular Filtration RatePahang Darul Makmur Tel 1 : (089)773183 Tel : ( 09)5133333 Ext : 2340 GMC Gleneagles Medical Centre Tel 2 : (089)773533 Fax : ( 09)5164272 GS Gentamicin and Streptomycin Fax : (089)778626 GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein 205

185 Fifth Report of the NationalFifth Transplant Report of Registrythe 2008 APPENDIX D National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Kidney Transplant Services APPENDIX C

MOH GLOSSARY

Hospital Tengku Ampuan Rahimah Hospital Tuanku Ja'afar AIIRB Angiotensin II Receptor Blocker Renal Transplant Clinic Renal Transplant Clinic ACE Angiotensin Converting Enzyme c/o Haemodialysis Unit c/o Haemodialysis Unit ADPKD Autosomal Dominant Polycystic Kidney Disease Jalan Langat Jalan Rasah AG Antigen 41200 Klang 70300 Seremban ALL Acute Lymphocytic Leukaemia Selangor Darul Ehsan Negeri Sembilan Darul KhususALP Alkaline Phosphatase Tel 1 : ( 03)33723333 Ext : 1411/1256 Tel 1 : ( 06)7684000 Ext : 4125ALT Alanine Transferase Tel 2 : ( 03)33757200 Tel 2 : ( 06)7604743 AML Acute Myelogenous Leukaemia Fax : ( 03)33729089 Fax : ( 06)7684711 Apr April ASH Ampang Puteri Specialist Hospital ATG Anti-thymocyte globulin Hospital Umum Sarawak Renal Transplant Clinic Aug August c/o Haemodialysis Unit AVM Arterio-venous Malformation Jalan Tun Ahmad Zaidi Adruce AZA Azathioprine 93590 Kuching BMI Body Mass Index Sarawak BMT Blood and Marrow Transplantation Tel 1 : (082)276757 BP Blood Pressure Tel 2 : (082)276528 BD Brain Death Fax : (082)276734 BID brought in dead CAPD Continuous Ambulatory Peritoneal Dialysis CD Cardiac Death PRIVATE CDA Congenital Dyserythropoeitic Anaemia CF Counting Fingers CHD Coronary Heart Disease Assunta Hospital C. S. Loo Kidney & Medical CKDSpecialist Chronic Kidney Disease Kidney Unit Centre CMV Cytomegalovirus Jalan Templer Perak Community Specialist HospitalCRF Case Report Form 46990 Petaling Jaya 227, Jalan Kampar Dec December Selangor Darul Ehsan 30250 Ipoh DF Deep Frozen Tel 1 : ( 03)77823433 Ext : 254 Perak Darul Ridzuan DFS Disease-free Survival Tel 2 : ( 03)76216696 Tel 1 : ( 05)2458918 Fax : ( 03)77814933 Tel 2 : ( 05)2545594 FD Freeze Dried Fax : ( 05)2554288 Feb February FK506 Tacrolimus GCT Germ Cell Tumour Damai Medical & Heart Clinic Fan Medical Renal Clinic GFR Glomerular Filtration Rate Renal Transplant Clinic Gleneagles Intan Medical CentreGMC Gleneagles Medical Centre c/o Haemodialysis Centre Suite 7.01, 7th Floor GS Gentamicin and Streptomycin 49-N, Jalan Ong Kim Wee Medical Office Building GVHD Graft Versus Host Disease 75300 Melaka 282, Jalan Ampang HA Hospital Ampang Melaka 50450 Kuala Lumpur Hb Haemoglobin Tel 1 : ( 06)2841204 Ext : 210/211 Tel : ( 03)42578822 HbsAg Hepatitis B surface Antigen Tel 2 : ( 06)2844805 Fax : ( 03)42523823 HCV Hepatitis C Virus Fax : ( 06)2844805 HD Haemodialysis HDL High Density Lipoprotein

206 185 Fifth Report of the APPENDIX D National TransplantFifth Report Registry of 2008 the National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Kidney Transplant Services APPENDIX C

GLOSSARYPRIVATE

KlinikAIIRB Dr Choo & Liew Angiotensin II ReceptorKPJ Blocker Ampang Puteri Specialist Hospital 9-0,ACE Lorong Lintas PlazaAngiotensin 1 ConvertingRenal Enzyme Transplant Clinic LintasADPKD Plaza, Jalan Lintas Autosomal Dominant PolycysticSuite 1-7, Kidney First Floor Disease 88380AG Kota KinabaluAntigen No.1, Jalan Mamanda 9 SabahALL Acute Lymphocytic LeukaemiaTmn Dato'Ahmad Razali TelALP : (088)238292 Alkaline Phosphatase 68000 Ampang FaxALT : (088)237292 Alanine Transferase Selangor Darul Ehsan AML Acute Myelogenous LeukaemiaTel : ( 03)42722500 Ext : 1250 Apr April Fax : ( 03)42702443 ASH Ampang Puteri Specialist Hospital KPJATG Selangor SpecialistAnti-thymocyte Hospital globulinNormah Medical Specialist Centre RenalAug Transplant ClinicAugust Renal Transplant Clinic c/oAVM Haemodialysis UnitArterio-venous Malformationc/o Haemodialysis Centre LotAZA 1, Jalan Singa 20/1,Azathioprine Seksyen 20 P.O. Box 3298 40300BMI Shah Alam Body Mass Index 93764 Kuching SelangorBMT Darul EhsanBlood and Marrow TransplantationSarawak TelBP : ( 03)55431111Blood Ext Pressure: 4533 Tel 1 : (082)440055 Ext : 260 FaxBD : ( 03)55431722Brain Death Tel 2 : (082)443785 BID brought in dead Fax : (082)443787 CAPD Continuous Ambulatory Peritoneal Dialysis PantaiCD Hospital PenangCardiac Death Prince Court Medical Centre RenalCDA Transplant ClinicCongenital DyserythropoeiticRenal TransplantAnaemia Clinic c/oCF Haemodialysis CentreCounting Fingers c/o Renal Dialysis Unit No.CHD 82, Jalan Tengah,Coronary Bayan BaruHeart DiseaseLevel 3 11900CKD Bayan LepasChronic Kidney Disease39, Jalan Kia Peng PulauCMV Pinang Cytomegalovirus 50450 Kuala Lumpur TelCRF : ( 04)6433888 Case Ext Report : 155 Form Wilayah Persekutuan FaxDec : ( 04)6432888 December Tel : ( 03)21600147 Ext : 2977 DF Deep Frozen Fax : ( 03)31600930 DFS Disease-free Survival FD Freeze Dried Renal Care, Ipoh Specialist Hospital Sabah Medical Centre Feb February Renal Transplant Clinic Renal Transplant Clinic FK506 Tacrolimus c/o Renal Care c/o Haemodialysis Centre IpohGCT Specialist HospitalGerm Cell Tumour Kingfisher Park, Kuala Inanam 26,GFR Jalan Raja DihilirGlomerular (Tambun) Filtration Rate88840 Kota Kinabalu 30350GMC Ipoh Gleneagles Medical CentreSabah PerakGS Darul RidzuanGentamicin and StreptomycinTel : (088)424333 TelGVHD 1 : ( 05)2418777 Graft Ext Versus : 275/276 Host DiseaseFax : (088)272622 TelHA 2 : ( 05)2413128Hospital Ampang FaxHb : ( 05)2541388Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

207 185 Fifth Report of the National Transplant Registry 2008 APPENDIX D Fifth Report of the National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Kidney Transplant Services APPENDIX C

PRIVATE GLOSSARY

AIIRB Angiotensin II Receptor Blocker Sime Darby Medical Centre Subang Simon Wong Medical & Kidney Clinic ACE Angiotensin Converting Enzyme Jaya Timberland Medical Centre ADPKD Autosomal Dominant Polycystic Kidney Disease Renal Transplant Clinic Lot 5160, Ground Floor c/o Clinic Dr Prasad Lorong 2, 2 1/2 miles Rock RoadAG Antigen 1, Jalan SS 12/1A 93250 Kuching ALL Acute Lymphocytic Leukaemia 47500 Subang Jaya Sarawak ALP Alkaline Phosphatase Selangor Darul Ehsan Tel 1 : (082)241242 ALT Alanine Transferase Tel : ( 03)56301212 Ext : 469 Tel 2 : (082)234466 AML Acute Myelogenous Leukaemia Fax : ( 03)56396188 Fax : (082)254242 Apr April ASH Ampang Puteri Specialist Hospital ATG Anti-thymocyte globulin Smartcare Dialysis Centre, Subang Jaya Sri Kota Medical Centre Aug August Klinik Pakar Dialisis Renal Transplant Clinic AVM Arterio-venous Malformation 52G, Jalan USJ 10/1B c/o Haemodialysis Centre AZA Azathioprine 47620 Subang Jaya Jalan Mohet BMI Body Mass Index Selangor Darul Ehsan 41000 Klang BMT Blood and Marrow Transplantation Tel : ( 03)56337618 Selangor Darul Ehsan BP Blood Pressure Fax : ( 03)56330618 Tel : ( 03)33733636 Ext : 7106BD Brain Death Fax : ( 03)33736888 BID brought in dead CAPD Continuous Ambulatory Peritoneal Dialysis Sunway Medical Centre Tan Medical Renal Clinic CD Cardiac Death Renal Transplant Clinic Healthcare Dialysis Centre CDA Congenital Dyserythropoeitic Anaemia c/o Haemodialysis Unit No. 41, Tingkat 1 CF Counting Fingers Suite A1-28, First Floor Jalan 6/31 CHD Coronary Heart Disease No 5, Jln Lagoon Selatan 46300 Petaling Jaya CKD Chronic Kidney Disease Bandar Sunway Selangor Darul Ehsan CMV Cytomegalovirus 46150 Petaling Jaya Tel : ( 03)77836423 CRF Case Report Form Selangor Darul Ehsan Fax : ( 03)77836422 Dec December Tel 1 : ( 03)74919191 Ext : 7784 DF Deep Frozen Tel 2 : ( 03)74911135 DFS Disease-free Survival Fax : ( 03)74918181 FD Freeze Dried Feb February Wee Kidney & Medical Specialist FK506 Tacrolimus Clinic GCT Germ Cell Tumour Suite 303A, 3rd Floor GFR Glomerular Filtration Rate Mahkota Medical Centre GMC Gleneagles Medical Centre No.3, Mahkota Melaka, Jalan Merdeka GS Gentamicin and Streptomycin 75000 Melaka GVHD Graft Versus Host Disease Melaka HA Hospital Ampang Tel 1 : ( 06)2818222 Ext : 3309 Hb Haemoglobin Tel 2 : ( 06)2813333 HbsAg Hepatitis B surface Antigen Fax : ( 06)2810560 HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein 208

185 Fifth Report of the APPENDIX D National TransplantFifth Report Registry of the 2008 National TransplantFifth Registry Report 2008 of the APPENDIX C National Transplant Registry 2008

Kidney Transplant Services APPENDIX C

GLOSSARYUNIVERSITY

AIIRBPusat Perubatan Universiti Angiotensin Kebangsaan II Receptor BlockerUniversiti Sains Malaysia Hospital ACEMalaysia Angiotensin Converting EnzymeRenal Transplant Clinic ADPKDRenal Transplant Clinic Autosomal (Medical Dominant 3) Polycysticc/o Haemodialysis Kidney Disease Unit AGJalan Tenteram Antigen 16150 Kubang Kerian ALLBandar Tun Razak,Acute Cheras Lymphocytic LeukaemiaKelantan Darul Naim ALP56300 Kuala lumpurAlkaline Phosphatase Tel 1 : ( 09)7673328 ALTWilayah PersekutuanAlanine Transferase Tel 2 : ( 09)7673329 AMLTel 1 : ( 03)91455555Acute MyelogenousExt : 7318 LeukaemiaFax : ( 09)7652198 AprTel 2 : ( 03)91703831April ASHFax : ( 03)91735316Ampang Puteri Specialist Hospital ATG Anti-thymocyte globulin Aug August AVMUniversity of MalayaArterio-venous Medical Centre Malformation AZARenal Transplant ClinicAzathioprine BMIc/o Ward 8TE DialysisBody UnitMass Index Jalan Universiti BMT Blood and Marrow Transplantation 59100 Kuala Lumpur BP Blood Pressure Wilayah Persekutuan BD Brain Death Tel 1 : ( 03)79494422 Ext : 2282/3093 BID brought in dead Tel 2 : ( 03)79492282 CAPDFax : ( 03)79568822 Continuous Ambulatory Peritoneal Dialysis CD Cardiac Death CDA Congenital Dyserythropoeitic Anaemia CF Counting Fingers CHD Coronary Heart Disease CKD Chronic Kidney Disease CMV Cytomegalovirus CRF Case Report Form Dec December DF Deep Frozen DFS Disease-free Survival FD Freeze Dried Feb February FK506 Tacrolimus GCT Germ Cell Tumour GFR Glomerular Filtration Rate GMC Gleneagles Medical Centre GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein

209 185 Fifth Report of the National Transplant Registry 2008 APPENDIX D Fifth Report of the National Transplant Registry 2008 Fifth Report of the APPENDIX C National Transplant Registry 2008

Liver Transplant Services APPENDIX C

MOH GLOSSARY

Hospital Kuala Lumpur Hospital Selayang AIIRB Angiotensin II Receptor Blocker Institute Paediatric Department of HepatobiliaryACE Angiotensin Converting Enzyme Jalan Pahang Lebuhraya Selayang-KepongADPKD Autosomal Dominant Polycystic Kidney Disease 50586 Kuala Lumpur 68100 Batu Caves AG Antigen Tel : ( 03)26906211 Selangor Darul Ehsan ALL Acute Lymphocytic Leukaemia Fax : ( 03)26913815 Tel : ( 03)61203233 ExtALP : 3314 Alkaline Phosphatase Fax : ( 03)61207564 ALT Alanine Transferase AML Acute Myelogenous Leukaemia Hospital Selayang Apr April Paediatric Hepatology Unit ASH Ampang Puteri Specialist Hospital Lebuhraya Selayang-Kepong ATG Anti-thymocyte globulin 68100 Batu Caves Aug August Selangor Darul Ehsan AVM Arterio-venous Malformation Tel : ( 03)61203233 AZA Azathioprine Fax : ( 03)61207564 BMI Body Mass Index BMT Blood and Marrow Transplantation BP Blood Pressure PRIVATE BD Brain Death BID brought in dead CAPD Continuous Ambulatory Peritoneal Dialysis Sime Darby Medical Centre Subang Jaya CD Cardiac Death 1, Jalan SS 12/1A CDA Congenital Dyserythropoeitic Anaemia 47500 Subang Jaya CF Counting Fingers Selangor Darul Ehsan CHD Coronary Heart Disease Tel : ( 03)56306193 CKD Chronic Kidney Disease Fax : ( 03)56306209 CMV Cytomegalovirus CRF Case Report Form Dec December DF Deep Frozen UNIVERSITY DFS Disease-free Survival FD Freeze Dried University of Malaya Medical Centre Feb February Department of Paediatrics FK506 Tacrolimus Jalan Universiti GCT Germ Cell Tumour 59100 Kuala Lumpur GFR Glomerular Filtration Rate Tel : ( 03)79492065 GMC Gleneagles Medical Centre Fax : ( 03)79556114 GS Gentamicin and Streptomycin GVHD Graft Versus Host Disease HA Hospital Ampang Hb Haemoglobin HbsAg Hepatitis B surface Antigen HCV Hepatitis C Virus HD Haemodialysis HDL High Density Lipoprotein 210

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