Annual Report 20 14 Eurotransplant International Foundation
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Annual Report 20 14 Eurotransplant International Foundation Edited by Undine Samuel Central office P.O. box 2304 2301 CH Leiden The Netherlands Tel. +31-71-579 57 00 Fax. +31-71-579 00 57 www.eurotransplant.org twitter.com/eurotransplant All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by any means, electronic, mechanical, photocopying or elswise, without prior permission. Eurotransplant | Annual Report 2014 1 CIP-GEGEVENS KONINKLIJKE BIBLIOTHEEK, DEN HAAG Annual Report/Eurotransplant International Foundation.–Leiden: Eurotransplant Foundation. -III., graf., tab. Published annually Annual report 2014 / ed. by Undine Samuel ISBN-EAN: 978-90-71658-33-4 Keyword: Eurotransplant Foundation; annual reports. 2 Eurotransplant | Annual Report 2014 Table of contents Foreword 5 1. Basic principles of the Eurotransplant community 9 2. Report of the Board and the central office 17 3. Transplant programs and their delegates in 2014 33 4. Eurotransplant: donation, waiting lists and transplants 41 5. Kidney: donation, waiting lists and transplants 65 6. Thoracic organs: donation, waiting lists and transplants 85 7. Liver and Intestine: donation, waiting lists and transplants 107 8. Pancreas and Islets: donation, waiting lists and transplants 121 9. Agreements between transplant programs within and outside Eurotransplant 135 10. Reporting of non-resident transplants in Eurotransplant 139 11. Histocompatibility Testing 141 12. Scientific Output in 2014 147 13. Eurotransplant personnel related statistics 151 14. Abbreviated financial statements 153 List of abbreviations 159 Eurotransplant | Annual Report 2014 3 4 Eurotransplant | Annual Report 2014 Foreword In 2014, Eurotransplant (ET) allocated 7.183 deceased donor organs from 2.041 donors to patients on the waiting list. Last year was the first full year of the membership of Hungary, accompanied by an increase in donors when compared to 2013. ET is now responsible for the allocation of donor organs on behalf of eight European countries, serving a region with more than 134 million inhabitants. Cooperation The international cooperation in ET continues to be highly beneficial and valuable for patients who are in need of an organ transplantation: • Larger donor and recipient pools allow a better matching between organs and the patients on the waiting list, thereby improving the short and long-term outcome of transplantation. • Special patient groups like children, high urgent patients or highly immunized patients have a better chance of receiving a suitable donor organ in time. • In case there is no suitable recipient in the donor country, organ loss can be prevented by making the organ available to patients in other ET member countries. Looking back to 2014, we have seen a minimal decrease in the total number of donors and transplants in all ET member states together (compared to 2013). In some countries, however, a slight increase could be realized. Detailed figures on waiting list, donation, transplantation, transplant outcome and international exchange of donor organs in 2014 are available in the online statistics library on the ET website (www.eurotransplant.org). Regarding the waiting list, ET started to have a closer look at the relatively high number of patients listed with a non-transplantable status, especially for kidneys and livers. Some of these patients have been listed with this status for a long period of time. ET suggests that the transplant centers should check these patient records in order to reevaluate them. Audits Due to reports of allegations of manipulation of clinical data from patients on the waiting list in Germany in 2012, donor rates dropped significantly and remained at a stable low rate in 2014. ET continued its close cooperation with the responsible national authorities to support the audit committees that perform on-site audits of all German transplant programs, making the necessary data available to them. As in previous years, also ET itself was – amongst others – audited by the German authorities concerning the allocation procedures for the different organs. All audits showed that allocation procedures were executed according to the rules and guidelines. In addition in 2014, quality assurance of ET processes was audited by external auditors related to the ISO 9001 certificate. Also this audit was concluded with a positive result. Non-resident reporting In this year’s Annual Report we report for the first time on non-resident transplants (see chapter 10). In 2012 the Board of ET decided to abolish the so-called 5% rule for non-resident patients on the national waiting lists. This decision was based on expert opinions and articles published indicating that this rule is not in line with European legislation and general ethical consideration. Eurotransplant | Annual Report 2014 5 In view of the above the non-resident policy which is laid down in the ET Manual was therefore adapted in 2013. It states that in order to achieve the best possible transparency regarding transplantation activities ET will report per transplant center all non-resident transplants according to national legislation on residency status in its Annual Report. Projects Several policies and recommendations were implemented in 2014. An overview of all policies and recommendations that were approved by the International Board of ET in 2014 are published in chapter 2.3 of this report. Following approval by the national authorities of the ET member states, these recommendations will be scheduled for future implementation. In 2014, the following projects were implemented: LAS was introduced in the Netherlands, a document upload module for LAS audit was implemented in the Eurotransplant Audit System and a cross match application was made available to laboratories. Also, a substantial upgrade of network components, storage servers, back-up and recovery facilities have been installed in 2014 in order to make the IT-infrastructure of ET robustly protected against any unforeseen disruptions (emergencies). Staff In March 2014, the Medical Director left the organization and a successor was appointed: Dr. Undine Samuel started in the position of Medical Director on August 1, 2014. Simultaneously, a new top management structure for the organization was implemented and the vacancy for General Director was published in December 2014. After an extensive selection process Dr. Peter Branger was appointed and commenced working with ET as of April 1, 2015. The staff of ET, together with experts in the ET member countries, continued working on allocation development, increasing international standardization and further enhancing transparency throughout 2014. This Annual Report represents an important element of our mission to be fully accountable for all the ongoing ET initiatives and activities in the different ET member states. We would like to use this opportunity to thank all of you for the good cooperation in 2014 in the interest of all patients waiting for their organ transplant. Prof.Dr.med. Bruno Meiser Dr. Undine Samuel President Medical Director 6 Eurotransplant | Annual Report 2014 Eurotransplant | Annual Report 2014 7 8 Eurotransplant | Annual Report 2014 1. Basic principles of the Eurotransplant community This chapter gives some general information on the Eurotransplant mission, on the services we provide and on the relationship with our member states. The Eurotransplant International Foundation is responsible for the mediation and allocation of organ donation procedures in Austria, Belgium, Croatia, Germany, Hungary, Luxembourg, the Netherlands and Slovenia. In this international collaborative framework, the participants include all transplant hospitals, tissue typing laboratories and hospitals where organ donations take place. The ET region numbers well over 134 million. In the following paragraphs the following topics are covered: 1. Eurotransplant’s mission, aims and goals; 2. The basic services that ET provides to its member states as laid down in Eurotransplant’s Basic Mandate. 3. Formal support to Eurotransplant by the ministries of Health of Eurotransplant’s member states: the so-called ‘Joint Declaration’. 1.1 Eurotransplant mission statement Organ transplantation offers life-saving and quality-of-life enhancing treatment options to patients with end-stage organ failure. Aiming to fulfil this potential, Eurotransplant was established and acts as a mediator between donor hospitals and transplant centers, for the benefit of such patients. Eurotransplant is a non-profit, international organization that facilitates patient-oriented allocation and cross- border exchange of deceased donor organs at the service of its member states. As such, • Eurotransplant manages the complex process of achieving the best possible match between available donor organs and patients on the transplant waiting list. • Eurotransplant acts transparently and in accordance with European Union regulations and ethical principles, and fully complies with national member state legislation. • Eurotransplant is actively engaged in developing best practice recommendations and policies to further improve organ allocation and transplant outcomes, based on robust data collection and state-of-the-art scientific research. Eurotransplant | Annual Report 2014 9 The following document was agreed upon by all National Authorities of Eurotransplant. It describes basic services that every member state expects Eurotransplant to provide. The budget for Eurotransplant’s