6Th International Conference on Thalassemia
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6tthh IInternationalnternational CConferenceonference onon Th aalassemialassemia 22016016 24th - 25th September, 2016 Eros Hotel, New Delhi HEALTH AL M N IS O S I I Under the Patronage of Ministry of T O A N Health and Family Welfare N jk’Vªh; LokLF; fe”ku BLOOD CELL UNDER Government of India NHM, MOHFW Abstract Book Organised by : Thalassemics India www.thalassemicsindia.org i 6th International Conference on Thalassemia Gold Sponsor Novartis Healthcare Pvt. Ltd. Sliver Sponsor Fresenius Kabi India Pvt. Ltd. Special thanks to our collaborators: Thalassaemia International Federation Sir Ganga Ram Hospital Apollo Hospitals ii HEALTH AL M N IS O S I I T O A N N jk’Vªh; LokLF; fe”ku BLOOD CELL UNDER NHM, MOHFW PREVENTION AND CONTROL OF HEMOGLOBINOPATHIES IN INDIA - THALASSEMIAS, SICKLE CELL DISEASE AND OTHER VARIANT HEMOGLOBINS 2015 National Health Mission Guidelines on Hemoglobinopathies in India Ministry of Health & Family Welfare Government of India 1 Contributors 1. Prof. IC Verma, Head, Department of Genetics, Sir Ganga Ram Hospital, New Delhi 2. Dr Sudhir Kr Gupta, Addl. DDG (NCD), Directorate of Health Services, MoHFW, Govt. of India, New Delhi 3. Dr Roshan Colah, Former Director-in-Charge, National Institute of Immuno-haematology (ICMR Institute), KEM Hospital Campus, Mumbai 4. Professor Arun Singh, National Advisor, RBSK, National Health Mission, MoHFW, Govt. of India, New Delhi 5. Prof. DK Gupta, Consultant and Head, Department of Hematology, Safdarjung Hospital & VMMC, New Delhi 6. Prof. K Ghosh, Former Director, National Institute of Immuno-haematology, (ICMR Institute), KEM Hospital Campus, Mumbai 7. Prof Renu Saxena, Professor & Head of the Department of Hematology, All India Institute of Medical Sciences, New Delhi 8. Prof. Sunil Gomber, Director, Paediatrics, UCMS & GTB Hospital, New Delhi 9. Prof Madhulika Kabra, Head, Genetics Unit, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi 10. Dr. Sujata Sinha, Adjunct Associate Professor, Centre for Comparative Genomics, Murdoch University Perth, (Former Technical Consultant, Action on Birth Defects Project, RBSK, NHM, Uttarakhand) 11. Dr. Tulika Seth, Additional Professor, Hematology, All India Institute of Medical Sciences, New Delhi 12. Prof. Jagdish Chandra, HOD Pediatrics, LHMC and Kalawati Saran Hospital, New Delhi 13. Prof Sarita Agarwal, Department of Medical Genetics, Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow 14. Prof Reena Das, Department of Hematology, Postgraduate Institute of Medical Education and Research, Chandigarh 15. Dr. V.K. Khanna, Sr. Consultant Pediatrician, Sir Ganga Ram Hospital, New Delhi 16. Dr. R.K. Jena, Professor & Head, Dept. of Clinical Hematology, SCB Medical College & Hospital, Cuttack 17. Dr. Sujata Mohanty, Addl. Professor, Centre of Excellence for Stem Cell Research, All India Institute of Medical Sciences, New Delhi 18. Mr. C.B.S. Dangi, Dean Faculty of Science, RKDF University, Bhopal 19. Dr. J.M Khungar, Senior Consultant, Hematology, Safdarjung Hospital, New Delhi 20. Prof. Dipika Mohanty, Senior Consultant, Hematology and Lab Director, Apollo Hospital, Bhubaneswar, Odisha 21. Dr. Menu Bajpai, Associate Professor, Hematology, ILBS, Vasant Kunj , New Delhi 22. Dr. Jitendra Sharma, Director, WHO Centre for Medical Technology, NHSRC, MoHFW, Govt, of India, New Delhi 23. Dr. Vanshree Singh, Director, IRCS, Blood Bank, New Delhi 24. Dr. Prakash Parmar, Exec, Secretary, Indian Red Cross Society, Gujarat Branch 25. Mrs. Shobha Tuli, Secretary, Thalassemics India, New Delhi 26. Ms. Vinita Srivastava, National Consultant, Blood Cell (NHM), MoHFW, Nirman Bhavan, New Delhi 2 Contents Messages .....................................................................................................05-20 Committees ................................................................................................21-24 Faculty ..........................................................................................................25-28 Conference Programme .........................................................................29-32 Abstracts .......................................................................................................33-61 Posters ...........................................................................................................63-68 3 Bio-Rad Laboratories HEMOGLOBIN TESTING She doesn’t have to worry about Thalassemia or Sickle Cell because her parents were screened for both conditions. Unfortunately, thousands of children born every day aren’t so lucky. Healthcare experts worldwide, rely on Bio-Rad HbA2 testing to confidently advise their patients and ultimately, their children. Bio-Rad HbA2: The choice of experts for over 25 years Bio-Rad Hemoglobin Testing and Screening s Thalassemia Testing s Hemoglobinopathy Screening s HbA1c Monitoring s Newborn Screening for Sickle Cell Disease A GLOBAL LEADER IN THALASSEMIA AND HEMOGLOBINOPATHY SCREENING For more information, visit www.bio-rad.com/diagnostics 4 6th International Conference on Th alassemia, 2016 Messages 5 “Equal access to quality healthcare for every thalassemic across India.” 6 7 8 9 10 11 12 13 14 Message Dear Participants, Dear Friends of our thalassaemia family, On behalf of the Board of Directors of TIF, I feel extremely privileged to welcome you all to the 6th International Conference on Thalassaemia in New Delhi. I wish to thank the organisers of this conference and in particular, Mrs ShobhaTuli – TIF Vice President, President of the Federation of Indian Thalassaemia Societies and Secretary of the Thalassaemics India, for their cordial invitation to the Thalassaemia International Federation, to address this great event. This very signifi cant educational event is concentrating participants from across the Indian Continent and beyond, aiming to promote the services both for the prevention of haemaoglobin disorders and the treatment of patients and very importantly to create a forum for exchanging and sharing information, knowledge and experiences. In recent decades, we have all been witnessed to the remarkable progress with regards to health and social improvements pertaining to our patients globally. These advances in the quality of care, have led to increased survival and a quality of life which were but adream in years gone by. However, these excellent outcomes are seen only in patients who have enjoyed the benefi ts of, and have adhered to the treatment opportunities off ered. In many parts of the world we can also still see big gaps, in the availability of state of the art programmes, and there is need for a major eff ort to reach all patients across the world. Without political priority and governmental programming these improvements, in all areas including prevention, clinical management and psychosocial support to our patients and their families cannot be achieved. Educating individual experts, academic research, are but a few of the major components of a wider need which encompasses health planning and health economics. What we know is that if chronic and hereditary diseases are not given the attention that they need by health planners, the result is premature death, poor quality of life and an increasing health burden. It must be understood that poor treatment, in the name of budgetary limitations, leads to increasing complications and fi nally more health expenditure as well as social injustice. There is a need for a fi rm political commitment to address this very signifi cant public health problem appropriately. The Indian Sub-continent constitutes one of the most densely populated countries in the world, where almost all forms of the haemoglobin disorders, mainly thalassaemia and sickle cell disease are highly prevalent and very heterogeneously spread across the country. TIF’s presence at this conference refl ects on its true commitment to lend its support and assistance to India, in a more systematic and focused way, as well as to reinforce the activities of each and every single thalassaemia association in this country. Our collaboration with India has been long and blessed with enthusiastic collaborators, both in the patient support associations and in the medical fi eld. As a propagation of this close collaboration with various stakeholders, was the undertaking by TIF of its biggest project to date, namely the Indian Project, in an ‘aff ected country across the world. Specifi cally, the project encompassed the development of ‘Charters of Priorities’ for the Indian Ministry of Health and Welfare and State Health Authorities of eight States, in collaboration with the Indian Medical community and the thalassaemia patients/parents associations. These Charters formed the reference base for state health authorities and associations alike to work together and collaborate with a view to instigating improvements in the quality of health care services provided to patients with haemoglobin disorders in India. The highlight of this tremendous eff ort contributed to the recent revision of the aforementioned ‘Disability Bill’ by the Indian Parliament. We are aware that much has already been achieved and we are truly grateful to the State governments of India, that much support is today provided to patients with these disorders in this country. However, we wish that these activities become more homogeneous across the c ountry and many of the remarkable activities adopted in some States are mimicked by all States of India and that the desired result is optimum care equally provided to all patients.