Donation, Waiting List and Transplants 27

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EUROTRANSPLANT INTERNATIONAL FOUND EUROTRANSPLANT INTERNATIONAL FOUNDATION Annual Report 2005 ATION Annual Report 2005 63082 bw NW3 29-06-2006 13:22 Pagina 1

EUROTRANSPLANT INTERNATIONAL FOUNDATION 2005

LEGALLY FOUNDED: MAY 12, 1969

Edited by Arie Oosterlee, Axel Rahmel and Wim van Zwet

Central office P.O. box 2304 2301 CH Leiden The Netherlands Tel. +31-71-579 57 95 Fax +31-71-579 00 57 www.eurotransplant.org

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, electroninc, mechanical, photocopying or otherwise, without prior permission. 63082 bw NW3 29-06-2006 13:22 Pagina 2

CIP-GEGEVENS KONINKLIJKE BIBLIOTHEEK, DEN HAAG

Annual Report/Eurotransplant International Foundation.–Leiden: Eurotransplant Foundation. -III., graf., tab. Published annually Annual report 2005 / ed. by Arie Oosterlee, Axel Rahmel and Wim van Zwet ISBN-10: 90-71658-25-2 ISBN-13: 978-90-71658-25-9 Keyword: Eurotransplant Foundation; annual reports.

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Table of contents

Board of Eurotransplant International Foundation 5

TRANSPLANT PROGRAMS AND THEIR DELEGATES IN 2005 6

Renal Programs 6 Heart Programs 7 Lung Programs 8 Liver Programs 9 Pancreas (*Islet) Programs 10 Tissue Typing Laboratories 11

Foreword 12

1. Report of the Board and the central office of Stichting Eurotransplant International Foundation 14

1.0 General 14 1.1 Policy 15 1.2 Central office 20 1.3 Advisory Committees 21 1.4 Recommendations approved 23

2. Eurotransplant: donation, waiting list and transplants 27

Table 2.1 Number of deceased organ donors, per country of origin and used for a transplant, from 2001 to 2005 27 Table 2.2 Number of deceased organ donors, used for a transplant, by organ from 2001 to 2005 27 Table 2.3 Demographic data on deceased organ donors, used for a transplant from 2001 to 2005 28 Table 2.4a Type of deceased organ donation, used in a transplant, from 2001 to 2005 29 Table 2.4b Type of deceased organ donation, used in a transplant, by country of donor origin for 2005 29 Table 2.4c Non-heart beating donors 2005 29 Table 2.4d Transplants from NHB donor in 2005 29 Table 2.5 Active Eurotransplant waiting list, by organ, as per December 31 from 2001 to 2005 30 Table 2.6 Registrations on the Eurotransplant waiting list, by organ from 2001 to 2005 30 Table 2.7 Number of transplanted organs, by organ, by donor type from 2001 - 2005 30 Table 2.8 Transplants from 2001 - 2005 30 Table 2.9 Mortality on the Eurotransplant Waiting List, from 2001 - 2005 30

3. Kidney: donation, waiting lists, and transplants 32

Table 3.1 Deceased donors / kidneys in Eurotransplant in 2005 32 Table 3.2 Active kidney transplant waiting list as per December 31, 2005 - characteristics 32 Table 3.3 Active kidney only transplant waiting list as per December 31 - characteristics 32 Table 3.4 Kidney transplants characteristics - 2005 33 Table 3.5 Living donor kidney transplants - kidney only - 2005 34 Figure 3.1 Dynamics of the Eurotransplant kidney transplant waiting list and transplants between 1969 and 2005 34

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4. Thoracic organs: donation, waiting lists, and transplants 35

Table 4.1 Deceased donors / hearts in Eurotransplant in 2005 35 Table 4.2 Deceased donors / lungs in Eurotransplant in 2005 35 Table 4.3 Active heart transplant waiting list as per December 31, 2005 - characteristics 35 Table 4.4 Active heart only transplant waiting list as per December 31 - characteristics 36 Table 4.5 Active heart + lung transplant waiting list as per December 31, 2005 - characteristics 36 Table 4.6 Active heart + lung only transplant waiting list as per December 31 - characteristics 36 Table 4.7 Active lung transplant waiting list as per December 31, 2005 - characteristics 36 Table 4.8 Active lung only transplant waiting list as per December 31 - characteristics 37 Table 4.9 Heart transplants 2005 - characteristics 37 Table 4.10 Heart + lung transplants 2005 - characteristics 37 Figure 4.1 Dynamics of the Eurotransplant heart waiting list and transplants between 1991 and 2005 38 Table 4.11 Lung transplants 2005 - characteristics 39 Figure 4.2 Dynamics of the Eurotransplant heart + lung waiting list and heart + lung transplants and Eurotransplant lung waiting list and lung transplants between 1991 and 2005 39

5. Liver: donation, waiting lists, and transplants 40

Table 5.1 Deceased donor livers in the Eurotransplant region in: 2005 40 Figure 5.1 Dynamics of the Eurotransplant liver waiting list and liver transplants between 1991 and 2005 40 Table 5.2 Active liver transplant waiting list as per December 31, 2005 - characteristics 41 Table 5.3 Active liver only transplant waiting list as per December 31 - characteristics 41 Table 5.4 Liver transplants 2005 - characteristics 41 Table 5.5 Living donor liver transplants - liver only 2005 42 Intestine transplants 2005 42

6. Pancreas: donation, waiting lists, and transplants 43

Table 6.1 Deceased donors /pancreas in Eurotransplant in 2005 43 Table 6.2 Active pancreas transplant waiting list as per December 31, 2005 - characteristics 43 Table 6.3a Active pancreas only transplant waiting list as per December 31 - characteristics 43 Table 6.3b Active kidney+pancreas transplant waiting list as per December 31 - characteristics 44 Table 6.4a Pancreas transplants 2005 - characteristics 44 Table 6.4b Number of pancreas islet transplantations 2005 44 Table 6.4c Pancreas transplants 2005 - characteristics 45 Figure 6.1 Dynamics of the Eurotransplant pancreas+kidney and islet+kidney waiting list, pancreas+kidney, islet+kidney, pancreas and islet-only transplants between 1991 and 2005 45

7. Histocompatibility Testing 46

7.1 Introduction 46 7.2 Eurotransplant External Proficiency Testing Schemes 46 7.2.1 External Proficiency Testing on HLA typing 46 7.2.2 External Proficiency Testing Exercises on molecular typing 46 7.2.3 External Proficiency Testing on Crossmatching 47 7.2.4 External Proficiency Testing Exercise on Screening 47 7.3 Programmes for the highly sensitised patients in Eurotransplant 47 7.4 Other activities 47 Figure 7.1. Transplanted AM patients 47 Figure 7.2. Patients in the AM waiting list 47

8. Publications in 2005 49

9. Annual Social Report Figures 52

10. Abbreviated Financial Statements 53

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Board of Eurotransplant International Foundation

as per December 31, 2005

Dr. B. Meiser, Munich president + on behalf of the thoracic section (A)

Prof.Dr. A.P.W.P. van Montfort, Amsterdam secretary / treasurer (D)

Prof.Dr. Y.F.C. Vanrenterghem past president (D)

Prof.Dr. J.P. van Hooff, Maastricht on behalf of the kidney section (A)

Prof.Dr. F. Mühlbacher, Vienna on behalf of the kidney section (A)

Prof.Dr. D. Ysebaert, Antwerp on behalf of the kidney section (A)

Prof.Dr. W. Schareck, Rostock on behalf of the pancreas section (A)

Prof.Dr. G. Laufer, Innsbruck on behalf of the thoracic section (A)

Prof.Dr. D. Van Raemdonck, Leuven on behalf of the thoracic section (A)

Prof.Dr. K-W. Jauch, Munich on behalf of the liver section (A)

Prof.Dr. J.P.M. Lerut, Brussels (LA) on behalf of the liver section (A)

Dr. J. Mytilineos, Ulm on behalf of the tissue typing section (A)

Prof.Dr. P. Schotsmans, Leuven ethics advisor (D)

Prof.Dr. R. Steininger, Vienna on behalf of the Austrian Transplant Society (B)

Prof.Dr. D. Ysebaert, Antwerp on behalf of the Belgian Transplant Society (B)

Dr. J.W. de Fijter, Leiden on behalf of the Dutch Transplant Society (B)

Prof.Dr. U. Heemann, Munich on behalf of the German Transplant Society (B)

Dr. J. Vonc˘ina, Ljubljana on behalf of the Slovenian Transplant Society (B)

Prof.Dr. F.H.J. Claas, Leiden on behalf of the Eurotransplant Reference Laboratory (C)

The Board of Stichting Eurotransplant International Foundation consists of: 10 members A: members representing organ / tissue typing sections 5 members B: members representing national transplant societies 1 member C: head of the Eurotransplant Reference Laboratory 3 members D: one member being financial expert, one member representing society (ethicist) and one past president

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TRANSPLANT PROGRAMS AND THEIR DELEGATES IN 2005

Definitions (according to Articles of Association of Stichting Eurotransplant International Foundation, version November 6, 2002)

Program: Any of the following transplantation areas: kidney, thoracic organs, liver, tissue typing, pancreas and islets, which have the approval of the competent and relevant authorities. (Article 2)

Delegate: Each center shall have the right to delegate one natural person in the Assembly for each program in which it performed transplantations during a year. On each reference date, the number of persons delegated (the ‘delegates’) by a center in the Assembly shall be reviewed. (Article 5.1) (If left open: no delegate appointed by transplant/tissue typing program or new program in 2005.)

RENAL PROGRAMS DELEGATE

Austria GA Medizinische Universitätsklinik, Graz H. Holzer IB Chirurgische Universitätsklinik, Innsbruck C. Bösmüller OE Krankenhaus der Elisabethinen, Linz B. Robl OL Allgemeines Krankenhaus, Linz G. Biesenbach WG Universitätsklinik für Chirurgie, Wien F. Mühlbacher

Belgium AN Universitair Ziekenhuis Antwerpen, Edegem D. Ysebaert BJ Academisch Ziekenhuis der Vrije Universiteit, Brussel J. Sennesael BR ULB, Hôpital Erasme, Bruxelles K. Wissing GE Universitair Ziekenhuis, Gent P. Peeters LA Cliniques Universitaires St. Luc, Bruxelles J. de Ville de Goyet LE Kinderdialyse Universitair Ziekenhuis Gasthuisberg, Leuven R. Van Damme-Lombaerts LG Centre Hospitalier Universitaire, Liège A. Deroover LM Universitair Ziekenhuis Gasthuisberg, Leuven Y. Vanrenterghem

Germany AK Universitätsklinikum der Rheinisch-Westfälischen TH, Aachen A. Homburg AU Zentralklinikum, Augsburg H. Weihprecht BB Ruhr Universität, Bochum R. Viebahn BC Charité-Campus Virchow Klinikum der Humboldt Universität, Berlin U. Frei BE Universitätsklinikum Benjamin Franklin, Berlin G. Offermann BM Kliniken der Freien Hansestadt, Bremen K. Dreikorn BO Klinikum der Urologischen und Medizinischen Universität, Bonn H-U. Klehr DR Technischen Universität, Dresden J. Passauer DU Med. Einrichtungen der Heinrich-Heine-Universität, Düsseldorf K. Ivens ES Universitätsklinikum, Essen O. Witzke FD Klinikum Fulda, Fulda R. Werner FM Klinikum der Johann-Wolfgang-Goethe-Universität, Frankfurt E. Scheuermann FR Klinikum der Albert-Ludwigs-Universität, Freiburg P. Pisarski GI Klinikum der Justus-Liebig-Universität, Gießen E. Feuring GO Klinikum der Georg-August-Universität, Göttingen F. Schulze HA Klinikum der Martin-Luther-Universität, Halle A. Hamza HB Klinikum der Ruprecht-Karls-Universität, Heidelberg J. Schmidt HG Universitäts-Krankenhaus Eppendorf, Hamburg X. Rogiers HM Nephrologisches Zentrum Niedersachsen, Hann. Münden V. Kliem HO Klinikum der Medizinischen Hochschule, Hannover M. Neipp HS Klinikum der Universität des Saarlandes, Homburg/Saar M. Girndt JE Klinikum der Friedrich-Schiller-Universität, Jena U. Ott

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KI Klinikum Christian-Albrechts-Universität, Kiel F. Fändrich KL Klinik der Universität Köln-Lindenthal, Köln W. Arns KM Städtische Krankenanstalten Köln-Merheim, Köln W. Arns KK Klinik und Poliklinik für Kinderheilkunde der Universität Köln-Londenthal, Köln W. Arns KS Westpfalz-Klinikum, Kaiserslautern T. Rath LP Klinikum der Universität, Leipzig J. Fangmann LU Klinikum der Medizinischen Universität, Lübeck L. Fricke MA Klinikum der Stadt, Mannheim P. Schnülle MH Klinikum Rechts der Isar der Technischen Universität, München S. Thorban ML Klinikum Großhadern der Ludwig-Maximilians-Universität, München K-W Jauch MN Klinikum der Westfälischen Wilhelms-Universität, Münster J. Brockmann MR Klinikum Lahnberge der Philipps-Universität, Marburg J. Hoyer MZ Klinikum der Johannes-Gutenberg-Universität, Mainz E. Wandel NB Med. Einrichtungen der Universität Erlangen-Nürnberg, Nürnberg RB Klinikum der Universität, Regensburg B. Krämer RO Klinikum der Universität, Rostock H. Seiter ST Katharinenhospital, Stuttgart C. Olbricht TU Klinikum der Eberhard-Karls-Universität, Tübingen W. Steurer UL Klinikum der Universität, Ulm J. Mayer WZ Klinikum der Julius-Maximilians-Universität, Würzburg K. Lopau

Luxembourg LX Centre Hospitalier de Luxembourg P. Duhoux

The Netherlands AW Academisch Medisch Centrum, Amsterdam S. Surachno GR Academisch Ziekenhuis, Groningen J. Homan van der Heide LB Leids Universitair Medisch Centrum, Leiden J. de Fijter MS Academisch Ziekenhuis, Maastricht J. van Hooff NY Universitair Medisch Centrum St. Radboud, Nijmegen A. Hoitsma RD Erasmus Medisch Centrum, Rotterdam W. Weimar RS Sophia Kinderziekenhuis, Rotterdam K. Cransberg UT Universitair Medisch Centrum, Utrecht R. Hené UW Wilhelmina Kinderziekenhuis, Utrecht M. Lilien

Slovenia LO University Medical Center, Ljubljana D. Kovac˘

HEART PROGRAMS DELEGATE

Austria GA Chirurgische Universitätsklinik, Graz A. Wasler IB Chirurgische Universitätsklinik, Innsbruck G. Laufer WG Universitätsklinik für Chirurgie, Wien A. Zukermann

Belgium AN Universitair Ziekenhuis Antwerpen, Edegem I. Rodrigus AS Onze Lieve Vrouw Ziekenhuis, Aalst M. Walravens BR ULB, Hôpital Erasme, Bruxelles M. Antoine GE Universitair Ziekenhuis, Gent F. Caes LA Cliniques Universitaires St. Luc, Bruxelles A. Poncelet LG Centre Hospitalier Universitaire, Liège J. Defraigne LM Universitair Ziekenhuis Gasthuisberg, Leuven J. Vanhaecke

Germany AK Universitätsklinikum der Rheinisch-Westfälischen TH, Aachen A. Moza BA Herz- & Diabeteszentrum Nordrhein-Westfalen, Bad Oeynhausen G. Tenderich BD Deutsches Herzzentrum, Berlin R. Hetzer DR Universitätsklinikum ‘Carl Gustav Carus’, Dresden S. Tugtekin

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ES Universitätsklinikum, Essen M. Kamler FM Klinikum der Johann-Wolfgang-Goethe-Universität, Frankfurt H.-G. Fieguth FR Klinikum der Albert-Ludwigs-Universität, Freiburg F. Beyersdorf GI Klinikum der Justus-Liebig-Universität, Gießen J. Bauer GO Klinikum der Georg-August-Universität, Göttingen M. Voß HA Klinikum der Martin-Luther-Universität, Halle I. Friedrich HB Klinikum der Ruprecht-Karls-Universität, Heidelberg F.-U. Sack HG Universitäts-Krankenhaus Eppendorf, Hamburg F. Wagner HO Klinikum der Medizinischen Hochschule, Hannover M. Strüber HS Klinikum der Universität des Saarlandes, Homburg-Saar H. Lausberg JE Klinikum der Friedrich-Schiller-Universität, Jena Th. Wittwer KI Klinikum der Christian-Albrechts-Universität, Kiel S. Hirt KL Klinik der Universität Köln-Lindenthal, Köln F. Kuhn-Régnier LP Klinikum der Universität, Leipzig J. Gummert MD Deutsches Herzzentrum, München A. Schütz ML Klinikum Großhadern der Ludwig-Maximilians-Universität, München B. Meiser MN Klinikum der Westfälischen Wilhelms-Universität, Münster C. Schmid MZ Klinikum der Johannes-Gutenberg-Universität, Mainz W. Kasper-König NB Med. Einrichtungen der Universität Erlangen-Nürnberg R. Tandler RB Klinikum der Universität, Regensburg L. Rupprecht

The Netherlands GR Academisch Ziekenhuis, Groningen RD Erasmus Medisch Centrum, Rotterdam A. Maat UT Universitair Medisch Centrum, Utrecht

Slovenia LO University Medical Center, Ljubljana R. Blumauer

LUNG PROGRAMS DELEGATE

Austria IB Chirurgische Universitätsklinik, Innsbruck G. Laufer WG Universitätsklinik für Chirurgie, Wien W. Klepetko

Belgium AN Universitair Ziekenhuis Antwerpen, Edegem P. Van Schil BR ULB, Hôpital Erasme, Bruxelles M. Estenne LA Cliniques Universitaires St. Luc, Bruxelles P. Evrard LM Universitair Ziekenhuis Gasthuisberg, Leuven G. Verleden

Germany BD Deutsches Herzzentrum, Berlin R. Hetzer DR Universitätsklinikum ‘Carl Gustav Carus’, Dresden S. Tugtekin ES Universitätsklinikum, Essen M. Kamler FM Klinikum der Johann-Wolfgang-Goethe-Universität, Frankfurt H.-G. Fieguth FR Klinikum der Albert-Ludwigs-Universität, Freiburg GI Klinikum der Justus-Liebig-Universität, Gießen C. Fegbeutel HG Universitäts-Krankenhaus Eppendorf, Hamburg F. Wagner HO Klinikum der Medizinischen Hochschule, Hannover M. Strüber HS Klinikum Universität des Saarlandes, Homburg/Saar H. Lausberg JE Klinikum der Friedrich-Schiller-Universität, Jena Th. Wittwer KI Klinikum der Christian-Albrechts-Universität, Kiel S. Hirt LP Klinikum der Universität, Leizpig H. Bittner ML Klinikum Großhadern der Ludwig-Maximilians-Universität, München B. Meiser MN Klinikum der Westfälischen Wilhelms-Universität, Münster C. Schmid MZ Klinikum der Johannes-Gutenberg-Universität, Mainz W. Kasper-König

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The Netherlands GR Academisch Ziekenhuis, Groningen M. Erasmus RD Erasmus Medisch Centrum, Rotterdam J. Bekkers UT Universitair Medisch Centrum, Utrecht

LIVER PROGRAMS DELEGATE

Austria GA Chirurgische Universitätsklinik, Graz F. Iberer IB Chirurgische Universitätsklinik, Innsbruck R. Margreiter WG Universitätsklinik für Chirurgie, Wien R. Steininger

Belgium AN Universitair Ziekenhuis Antwerpen, Edegem D. Ysebaert BR ULB, Hôpital Erasme, Bruxelles GE Universitair Ziekenhuis, Gent R. Troisi LA Cliniques Universitaires St. Luc, Bruxelles J. Lerut LG Centre Hospitalier Universitaire, Liège O. Detry LM Universitair Ziekenhuis Gasthuisberg, Leuven J. Pirenne

Germany AK Universitätsklinikum der Rheinisch-Westfälischen TH, Aachen S. Müller BC Charité-Campus Virchow Klinikum der Humboldt Universität, Berlin S. Jonas BO Chirurgische Universitätsklinik, Bonn M. Wolff ES Universitätsklinikum, Essen M. Malagó FM Klinikum der Johann-Wolfgang-Goethe-Universität, Frankfurt W. Bechstein GO Klinikum der Georg-August-Universität, Göttingen T. Lorf HB Klinikum der Ruprecht-Karls-Universität, Heidelberg J. Schmidt HG Universitäts-Krankenhaus Eppendorf, Hamburg X. Rogiers HO Klinikum der Medizinischen Hochschule, Hannover Th. Becker HS Klinikum Universität des Saarlandes, Homburg/Saar O. Kollmar JE Friedrich Schiller Universität, Jena U. Settmacher KI Klinikum der Christian-Albrechts-Universität, Kiel A. Müller KL Klinik der Universität Köln-Lindenthal T. Beckurts LP Klinikum der Universität, Leipzig J. Hauss MB Klinikum Otto-von-Guericke Universität, Magdeburg H. Lippert MH Klinikum Rechts der Isar der Technischen Universität, München V. Schulte - Frohlinde ML Klinikum Großhadern der Ludwig-Maximilians-Universität, München K-W. Jauch MN Klinikum der Westfälischen Wilhelms-Universität, Münster J. Brockmann MZ Klinikum der Johannes-Gutenberg-Universität, Mainz J. Thies NB Chirurgische Klinik der Universität Erlangen-Nürnberg, Erlangen T. Meyer RB Klinikum der Universität, Regensburg A. Obed RO Klinikum der Universität, Rostock E. Klar TU Klinikum der Eberhard-Karls Universität, Tübingen W. Steurer WZ Klinikum der Julius-Maximilians-Universität, Würzburg D. Meyer

The Netherlands GR Academisch Ziekenhuis, Groningen M. Slooff LB Leids Universitair Medisch Centrum, Leiden J. Ringers RD Erasmus Medisch Centrum, Rotterdam H. Tilanus

Slovenia LO University Medical Centre, Ljubljana S. Markovic˘

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PANCREAS (*ISLET) PROGRAMS DELEGATE

Austria GA Chirurgische Universitätsklinik, Graz F. Iberer IB Chirurgische Universitätsklinik, Innsbruck R. Margreiter WG Universitätsklinik für Chirurgie, Wien F. Mühlbacher

Belgium AN Universitair Ziekenhuis Antwerpen, Edegem D. Ysebaert BR ULB, Hôpital Erasme, Bruxelles A. Hoang GE Universitair Ziekenhuis, Gent J. De Roose LA Cliniques Universitaires St. Luc, Bruxelles J. de Ville de Goyet LG Centre Hospitalier Universitaire, Liège A. Deroover LM Universitair Ziekenhuis Gasthuisberg, Leuven W. Coosemans BP Academisch Ziekenhuis der Vrije Universiteit, Brussel D. Pipeleers

Germany BB Knappschaftskrankenhaus, Bochum R. Viebahn BC Charité-Campus Virchow Klinikum der Humboldt Universität, Berlin A. Kahl BO Chirurgische Universitätsklinik, Bonn M. Wolff ES Universitätsklinikum, Essen A. Paul FM Klinikum der Johann-Wolfgang-Goethe-Universität, Frankfurt W. Bechstein FR Klinikum der Albert-Ludwigs-Universität, Freiburg P. Pisarski GI Klinikum der Justus-Liebig-Universität, Gießen D. Winter HB Klinikum der Ruprecht-Karls-Universität, Heidelberg J. Schmidt HG Universitäts-Krankenhaus Eppendorf, Hamburg X. Rogiers HO Klinikum der Medizinischen Hochschule, Hannover R. Lück KI Klinikum der Christian-Albrechts-Universität, Kiel F. Fändrich KL Klinik der Universität Köln-Lindenthal T. Beckurts KM Städtische Krankenanstalten Köln-Merheim, Köln T. Beckurts LP Klinikum der Universität, Leipzig H. Witzigmann MH Klinikum Rechts der Isar der Technischen Universität, München M. Stangl ML Klinikum Großhadern der Ludwig-Maximilians-Universität, München H. Arbogast MN Klinikum der Westfälischen Wilhelms-Universität, Münster J. Brockmann MR Klinikum Lahnberge der Philipps-Universität, Marburg E. Dominguez MZ Klinikum der Johannes-Gutenberg-Universität, Mainz G. Otto NB Chirurgische Klinik der Universität Erlangen-Nürnberg, Erlangen J. Thies RB Klinikum der Universität, Regensburg RO Klinikum der Universität, Rostock E. Klar TU Klinikum der Eberhard-Karls-Universität, Tübingen W. Steurer UL Klinikum der Universität, Ulm J. Mayer WZ Klinikum der Julius-Maximilians-Universität, Würzburg D. Meyer LU Klinikum der Medizinischen Universität, Lübeck

The Netherlands GR Academisch Ziekenhuis, Groningen R. Ploeg LB Leids Universitair Medisch Centrum, Leiden J. Ringers

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TISSUE TYPING LABORATORIES DELEGATE

Austria GA Universitätsklinik, Abteilung für Transfusionsmedizin und Immunohämatologie, Graz U. Posch IB Universitätsklinik, HLA Labor, Innsbruck H. Schennach OL Allgemeines Krankenhaus, Blutzentrale, Linz C. Gabriel OW Allgemeines Krankenhaus, HLA Labor, Wels R. Loizenbauer WG Institut für Blutgruppenserologie, Wien W. Mayr

Belgium AN Bloedtransfusiecentrum Antwerpen, Belgische Rode Kruis, Edegem A. Vanhonsebrouck BJ Academisch Ziekenhuis der Vrije Universiteit, Bloedtransfusiecentrum Jette, Brussel C. Demanet BR Hôpital Erasme, Tissue typing laboratory, Bruxelles M. Andrien GE Universitair Ziekenhuis, Tissue typing laboratory, Gent I. Van Haute LA Université de Louvain, Tissue typing laboratory, Bruxelles D. Latinne LG Laboratoire des Groupes Sanguins, Liège G. Maggipinto LM Bloedtransfusiecentrum, Belgische Rode Kruis, Leuven M.-P. Emonds

Germany BC Charité-Campus Virchow Klinikum der Humboldt Universität, Berlin C. Schönemann BE Universitätsklinikum Benjamin Franklin, Labor für Gewebetypisierung, Berlin V. Mansmann DU Institut für Blutgerinnung und Transfusionsmedizin, Düsseldorf A. Platz ER Institut für Klinische Immunologie, Erlangen B. Spriewald ES Universitätsklinikum, Institut für Immunologie, Essen F. Heinemann FM Immunohaematologie, Blutspendedienst Hessen, Frankfurt C. Seidl FR Blutspendedienst, Labor für Gewebetypisierung, Freiburg GI Institut für Klinische Immunologie und Transfusionsmedizin, Gießen S. Immenschuh GO Klinikum der Universität, HLA Labor, Göttingen H. Neumeyer HA Institut für Phathologische Biochemie, Interdisziplinäres Typisierungslabor, Halle W. Altermann HB Institut für Immunologie und Serologie, Heidelberg S. Scherer HG Universitäts-Krankenhaus Eppendorf, HLA Labor, Hamburg T. Binder HO Klinikum der Medizinischen Hochschule, Immunohaematologie/Blutbank, Hannover M. Hallensleben KI Klinikum der Christian-Albrechts-Universität, HLA Labor, Kiel S. Jenisch KM Institut für Transfusionsmedizin, Köln-Merheim G. Brand KS Institut für Rechtsmedizin, Transplantationsimmunologie, Kaiserslautern LU Institut für Immunologie und Transfusionsmedizin, Lübeck S. Görg ML Kinderklinik der Ludwig-Maximilians-Universität, HLA Labor, München M. Spannagl MZ Klinikum der Johannes-Gutenberg Universität, HLA Labor, Mainz W. Hitzler RO Klinikum der Universität, Abteilung für Transfusionsmedizin, HLA Labor, Rostock V. Kiefel TU Klinikum der Eberhard-Karls-Universität, Abt. für Transfusionswesen und Blutbank, Tübingen D. Wernet UL DRK Blutspendezentrale, Transplantationsimmunologie, Ulm J. Mytilineos

Luxembourg LX Centre Hospitalier, HLA Lab, Luxembourg F. Hentges

The Netherlands AW Centraal Laboratorium Bloedtransfusiedienst, Nederlandse Rode Kruis, Amsterdam N. Lardy GR Laboratorium voor transplantatie-immunologie, Groningen S. Lems LB Leiden University Medical Centre, Immunohaematologie, Leiden G. Schreuder MS Academisch Ziekenhuis, Laboratorium voor weefseltypering, Maastricht P. van den Berg-Loonen NY Academisch Ziekenhuis St. Radboud, Bloedtransfusiedienst, Nijmegen W. Allebes UT Academisch Ziekenhuis, Bloedbank, Utrecht H. Otten

Slovenia LO Tissue Typing Centre, Blood Transfusion Centre, Ljubljana B. Vidan-Jeras

ETRL Eurotransplant Reference Laboratory, Leids Universitair Medisch Centrum, Leiden, The Netherlands F. Claas, I. Doxiadis, G. Schreuder

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Foreword

We hereby present to you the Annual report 2005 of the Eurotransplant International Foundation. The objective of this report is to be accountable for the activities and initiatives that were undertaken in 2005 in Austria, Belgium, Germany, Luxembourg, the Netherlands and Slovenia towards the internal and external parties with a vested interest in the foundation such as: • the national regulating transplant authorities, • the national representatives of the transplant societies, • the financing authorities • the donor hospitals, • the transplant centers, • the tissue typing laboratories • the employees of the Leiden office.

As always, many people have worked systematically to achieve our mission to encourage organ transplantation and to reach the goals associated with its mission. Obviously, the good work was done by doctors and nurses of the donor hospitals and by the transplant centers, the tissue typers, the transplant coordinators and by many others like the people working at the Leiden office. Our organ advisory committee members put a lot of time and effort in setting organ allocation standards. To reach the goals stated in our mission, Eurotransplant manages its three core processes, state of the art organ allocation, algorithm development and data registry.

Data presentation in this Annual Report has been further harmonized, so that now for each organ the first table gives you an overview on donors and organs reported procured and finally transplanted. As in the previous years an extended version of the report, including data per transplant center, is available via the Eurotransplant Fmember website (www.eurotransplant.nl) 2005 was a remarkable year in several ways, the most important and encouraging development being a significant elevation in organ donation in most of the ET countries. In Belgium, Austria and Germany the number of deceased donors increased by 7,7%, 10,5% and 12,6% respectively. It is of interest to note, that two-thirds of this rise is due to an increase of the number of donors above the age of 65. In the Netherlands, in spite of an increase in non heart beating donors (NHBD), the total number of deceased donors fell unfortunately. In 2005 the size of the kidney waiting list further decreased resulting from both an increase in living and deceased kidney donation. At the same time the increase in the number of livers transplanted did not result in a reduction of waiting list size and waiting list mortality, in fact both were steadily increasing in 2005. Unfortunately in 2005 the number of split liver procedures dropped significantly by 18,5% compared to 2004. In spite of the rise in organ donation in general the number of heart transplants even showed a further decline in 2005. A substantial fraction of the hearts reported and offered was not procured or transplanted in 2005. Currently the size of the heart waiting list is steeply growing. In contrast to the development in the heart transplant area, the number of lung transplants has been rising continuously during the past years. Pancreas transplantation is dominated by combined kidney-pancreas transplantation; the number of pancreas-only transplantation was actually reduced in 2005.

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In the area of information technology two important developments took place: the development and implementation of electronic data exchange systems and the technical switchover to web-based technology.

In order to reduce the human factor in the administrative processes of donor referral, significant steps have been made this year by introducing electronic data exchange almost entirely replacing communication by fax and telephone. Development and implementation of electronic data exchange systems was realised between Eurotransplant and two national organ procurement agencies: the Dutch NTS and the German DSO.

During the year 2005, the ENIS computer system and data entry system switched over to a new web-based technology. By means of the new technology, the Eurotransplant community has been offered easier, more flexible and more user friendly possibilities to access the system and the data stored.

On the first of September Guido Persijn and Bernard Cohen stepped down after having been medical and general director for over 30 years. For the past 9 years they were guided by Yves Vanrenterghem who himself handed over his presidency to Bruno Meiser. Yves will continue to serve by providing his expertise in the new established function of past president. Guido, Bernard and Yves were largely responsible for the organisational development and the success of our organisation. The board and directors remain grateful for all they have done.

Dr. Bruno Meiser Wim van Zwet Dr. Axel Rahmel Arie Oosterlee MBA President Director Finance & IT Medical Director General Director

Leiden, July 2006

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1. Report of the Board and the central office of Stichting Eurotransplant International Foundation

V.C. Diepeveen-Huijsman and K. Dijkstra, Eurotransplant International Foundation, the Netherlands

The Board of Stichting Eurotransplant International Foundation met on January 19, May 30 and October 5 & 7, 2005. The Board elected Dr. B. Meiser as the new Eurotransplant president in succession to Prof.Dr. Y. Vanrenterghem whereas Prof.Dr. Y. Vanrenteghem was elected as past president. The Board elected Prof.Dr. F. Mühlbacher as vice-president. Four new Board members A were elected by the Assembly: the former Board members B (national representatives) Prof. Dr. F. Mühlbacher and Prof.Dr. D. Ysebaert were elected in the kidney section. One of these two members was elected in succession to Prof.Dr. Y. Vanrenterghem and the other member was elected due to an extension of the composition of the Board with one Board member A position in the kidney section. The third member A who was elected was Prof.Dr. K-W. Jauch in the liver section in succession to Prof.Dr. J. Hauss. As a consequence of the extension of the composition of the Board with one Board member A position in the thoracic section, Prof.Dr. D. Van Raemdonck was elected as the fourth Board member A.

1.0 General

Following the resignation of the former directors, Dr. B. Cohen and Dr. G. Persijn, the Board discussed the future ET management structure. It was decided to appoint one general director and two directors for medical and financial/IT affairs. In the course of the year, Arie Oosterlee, MD MBA, Dr. Axel Rahmel and Wim van Zwet were appointed as general director, medical director and financial/IT director respectively. The three new directors were officially welcomed at the Board meeting of October 5, 2005. Several farewell festivities were organized for the former president Prof. Dr. Yves Vanrenterghem and the former directors, Dr. Bernard Cohen and Dr. Guido RPersijn. The Board confirmed that according to the regulations in the ET manual, it is up to procurement teams to choose the preservation solution to be used in organ procurement procedures. The Board furthermore decided that the Eurotransplant Manual and the Eurotransplant Network Information System (ENIS) Manual contain the official regulations of ET and that they are part of the Eurotransplant ISO certified quality system. These regulations are to be followed by all ET users.

An initiative by The Transplant Society to establish a Global Alliance for Transplantation (GAT) was supported by the Board. This initiative aims at standardization of world wide data collection.

Prof. Dr. Raimund Margreiter resigned from the organization of the annual winter meeting in Fügen. The Board was pleased however that Prof. Dr. Günther Laufer was prepared to continue the organization. It was furthermore decided to organize the 2006 winter meeting in the same way as in previous years but that for 2007 another setup and location will be considered.

Since national legislation plays an increasing role in setting rules in the field of organ allocation, the Board decided to start a discussion and to take steps in order to keep allocation harmonized.

The 2005 Henk Schippers Young Investigators Award was granted to Maarten Naesens from the Department of Nephrology at the University Hospital Leuven in Belgium. He was invited to present his data at the annual Eurotransplant winter meeting in Fügen/Austria (January 2006).

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1.1 Policy

The main part of the Board discussions concentrated on the proposed recommendations by the various Advisory Committees. Obviously, the work done in these committees contributes to improve the core of the business, namely: state of the art allocation. The Board is grateful for all the time and efforts the Committee members have provided to this important part of the work of Eurotransplant. A complete list of all recommendations approved in 2005 is published under section 1.4 of this chapter.

The following main topics were discussed:

Eurotransplant Kidney Advisory Committee (ETKAC)

A module for conversion from ICD-10 codes into EDTA codes was included in ENISi and will be implemented by April 2006.

Following two cases in which kidneys of immunized ESP patients were acutely rejected; the ETKAC considered to withdraw RKAC01.03 but concluded that withdrawal was not yet justified. In order to be better prepared to take a decision, the ETKAC decided on the following measures: • Retrospective analysis on the effect of HLA-DR matching on graft and patient survival. • Prepare an overview of the follow-up return rate on a national as well as on a center level. • Formulation of RKAC01.05.

The ETKAC again discussed the problem of long waiting non-resident patients. According to Belgian law, non-resident patients can enter ET waiting lists but they can only be served after all other ET resident patients. Despite the fact that the Belgian Transplant Council is seeking for a solution for those non-residents who were registered prior to implementation of the Belgian transplant law of 1997, the ETKAC is of the opinion that the Italian patients involved, should receive a letter in which they are asked to make a choice for either the Italian or the Belgian waiting list.

The ETKAC discussed solutions for complicated allocation of too old donor kidneys which cannot be allocated through ETKAS and therefore have to be allocated through the regular ETKAS. The possible solutions are to be further investigated.

Notwithstanding strong pleas during several meetings by an external advisor, the ETKAC was still not convinced that all pediatric donor kidneys should be allocated to pediatric recipients.

Eurotransplant Liver Advisory Committee (ELAC)

The ELAC concluded that the implementation of the T2 priority achieved its primary goal by placing the sickest patients on top of the waiting list, which also presented a first step towards a MELD-based liver allocation. A next step was to admit a selected group of patients with a hepato-cellular carcinoma to urgency T2. Nonetheless, the group of T2 patients deserved special attention and will be continually monitored.

With regard to implementation of MELD, a PELD alternative for patients younger than twelve years was formulated in a consensus meeting with all pediatric centers represented. Further topics discussed were the financing of the implementation and maintenance of MELD. The ELAC also decided on several specifications for the future MELD-based ELAS: statuses high urgency and approved combined organs, T2 AB0 equivalent, abolishment of maximum waiting time, reactivation after temporarily ‘not transplantable’, as well as AB0 blood group rules. For MELD-specific data collection a MELD/PELD module was realized, allowing centers to provide MELD and PELD data upon registration of patients on the liver waiting list; PELD data will only be used for scientific purposes.

Since intestine allocation is still under auspices of the ELAC, the current status of intestine allocation was analyzed. Despite small numbers in terms of waiting list and transplants, the ELAC decided that, for the time being, no changes in the allocation had to be made. Despite existing growing pains in this field of transplantation, it was also decided that the initiative of a pan-European intestine waiting list, combining waiting lists of Italy, Spain, Switzerland, France and Eurotransplant, should be continued.

The ELAC also discussed modalities for allocation of extended criteria donors (ECD), the so-called rescue allocation. Rescue allocation can, depending on logistical and/or medical circumstances, take place in a sequential

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or competitive fashion. In order to facilitate allocation of ECD’s, the ELAC welcomed the implementation of an extended donor/recipient profile in ENIS, which was enforced by the German Medical Council (Bundesärztekammer).

Eurotransplant Pancreas Advisory Committee (EPAC)

The EPAC accepted the regulations which were proposed by the head of the ET Reference Laboratory with regard to the establishment of a ‘HIT’ program for highly immunized and retransplant pancreas patients.

Several suggestions for improvement of the pancreas recipient registration screen were accepted as well as several primary disease codes. Furthermore, an extended donor profile in order to optimize allocation procedures for ECD’s was accepted.

Improvement of data exchange and the return rate of quality forms were again issues of discussion in the EPAC.

The EPAC adapted a proposal for a prospective analysis of the PAncreas Suitability Score. It was concluded that some factors needed a retrospective study, e.g. post-transplant factors.

Eurotransplant Thoracic Advisory Committee (EThAC)

In order to increase the likelihood of receiving a transplant for an HU patient and in order to improve country imbalances, the EThAC completely revised the thoracic allocation scheme.

The EThAC was informed that a web based data entry system for collecting post-transplant data for hearts was created.

The EThAC agreed on the principle of mandatory collecting of data for the purpose of evaluating the benefit of the UNOS lung allocation score of patients on the ET waiting list. To this end the establishment of a list of clinical profiles for lung transplant candidates was agreed upon.

A proposal was accepted to establish an international lung audit group which group for the time being will judge the HU lung status according to German criteria. An in-depth evaluation of the new system after six months will be performed and presented to the EThAC.

The EThAC discussed the introduction of an urgency tier U in analogy to the German situation. It was concluded that harmonization of an allocation scheme as well as having objective measures is very desirable for all ET countries. Using a continuous risk score may lead to a classification into 3 urgency classes (HU, U and T).

Eurotransplant Organ Procurement Committee (OPC)

The OPC discussed the criteria for compromised donors and concluded that there is certainly a need to decide on definitions. However, it was the OPC’s opinion that this should be discussed on a national level rather than by the ET Advisory Committees. Adjustment in the donor profiles of these criteria was also considered to be a decision to be taken by national transplant societies.

The revision of quality forms was again topic of discussion. A German version of the quality forms – which is in the English language – will be mandatory as of January 1, 2006 in Germany. The OPC considered usage of these forms in Germany as a ‘try-out’ which will be evaluated in a future OPC meeting.

Education of transplant coordinators was considered to be a field of common interest for those involved in organ donation and organ transplantation. This issue will be further discussed in future OPC meetings.

Policy guidelines with regard to transmission of rabies through organ transplantation were formulated and submitted to the ET Board.

The OPC discussed the definition of a set of minimal donor data required for reporting a donor. The suggested set of data will be finalized in 2006.

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Eurotransplant Computer Services Working Group (CSWG)

The CSWG was informed about the switch to web based technology which took place in the course of 2005. A pro- gress report was given on the three major components of ENISi: recipient, waiting list and transplant registration. The recipient part was completed in 2005 whereas the two other components are scheduled to be completed in 2006.

Since the DataWareHouse was hardly used by external users, it was decided to phase out the DWH for this category of users and to develop extended extracts in ENIS to compensate for this.

Eurotransplant Tissue Typing Advisory Committee (TTAC)

The TTAC is awaiting results of a first study on using new barcode labels for cross match sera. Implementation of virtual PRA in the allocation system was discussed. Another issue of discussion was the increase of points for homozygous patients. Furthermore, the tissue typing centers (TTC) were recommended to report HLA-C and –DQ typing results to ET, although there is no convincing evidence of the clinical effect yet. It was decided that all TTC must participate in the external proficiency testing as mentioned in the ET manual and organized by ETRL. With regard to complement dependent cytotoxicity (CDC) screening performed after a sensitizing event, e.g. transfusion, the TTAC suggested that the Dutch laboratories would release Standards for Histocompatibility Testing mentioning this criterion.

Eurotransplant Ethics Committee (EC)

Following the consensus statement of the Amsterdam forum on the care of the life kidney donor, the EC formulated a draft recommendation which will be further developed.

It was concluded by the EC that refugees who have been admitted to a country based on a political decision, have the right to receive medical help. The 5% non-resident rule was not considered to be applicable for this category of patients.

Another topic of discussion was the question whether there should be admission criteria for waiting list registration, e.g. maximum number of transplantations. To the opinion of the EC, chances of benefit of transplantation as well as medical responsibility should be taken into consideration in answering this question.

With regard to safety of living related liver donation, the EC concluded that there should be a stricter donor check in comparison with the living related kidney situation. In case of graft failure after a living related liver donation, the patient should be eligible for the HU status for retransplantation with a post-mortem liver from the ET pool. Non-resident patients however, should not be eligible for this regulation.

Eurotransplant Financial Committee

The FC discussed and approved the Annual Accounts 2004 as well as the budget proposal 2006.

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Joint declaration regarding cooperation within the framework of Eurotransplant International Foundation

The Minister of Consumer Affairs, Public Health and Environment of the Kingdom of Belgium, The Federal Minister of Health of the Federal Republic of Germany, The Minister of Health of the Grand Duchy Luxembourg, The Minister of Health, Welfare and Sport of the Kingdom of the Netherlands, The Federal Minister of Labour, Health and Social Affairs of the Republic of Austria and The Minister of Health of the Republic of Slovenia issue the following joint declaration regarding cooperation within the framework of Eurotransplant International Foundation 1. Introduction As ministers of health we express our appreciation of the activities of Eurotransplant International Foundation (ETI) in Leiden, the Netherlands. ETI is a foundation that has arisen from private initiative. We take the view:

• that the importance of international cooperation on organ transplantation within the ETI framework has been demonstrated and should be continued; • that distribution of the allocated donor organs as fairly as possible within a transparent and objective allocation system according to medical criteria is crucial for the acceptance of transplantation medicine in the participating countries; • that a less voluntary form of cooperation on organ exchange within the ETI framework is necessary to retain public confidence and to bring about the required strengthening in ETI=s position; • that government responsibility within the existing regulatory framework for this area is unequivocal, as witnessed also by the legislation passed in the various countries recently; • that the time is ripe to shape government involvement, also given the background of a possible broadening in cooperation within the ETI framework; • that there is a need for ETI to be strengthened and for a clear and unambiguous framework for ETI to operate within, as this will enable it to perform its duties responsibly. 2. Framework

Given the above, we have agreed on the following framework. It incorporates the criteria that are essential for ETI to continue to operate responsibly and has the following components: - objective allocation system according to medical criteria; - safety and quality requirements; - transparency and follow-up; - government involvement. 3. Framework details An objective allocation system according to medical criteria All post mortal organs that become available for implantation (donor organs) in the participating countries are – taking account of the respective domestic legislation – reported to ETI1. Using the allocation criteria arrived at on the basis of consensus, ETI’s task is to ensure optimum allocation of the donor organs. The donor organs are allocated according to the following criteria:

• the most important factor is to maximize equality of opportunity for patients, and to do so by taking into account objective medical criteria (e.g. compatibility of organ with recipient, the expected transplantation result, medical urgency and how long a recipient has been waiting) as well as individual differences; • the allocation system must be patient oriented; • the allocation procedures must be transparent and objective;

1 Within the framework of the twinning agreements between the participating countries’ transplantation centers and similar institutions in other countries the same principles are applied as those included in the present document.

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Procedures must ensure justified, genuine distribution across the participating countries in a manner that takes account of the solidarity principle within each country. The objective is transparency of the medical criteria applied to transplantation and the moment of registration on the waiting list. The placing of patients on the waiting list and the determination of the criteria applied here are matters primarily for the doctors concerned and must take place in accordance with the most recent advances in medical science. Safety and quality requirements The state of a donor organ eligible for allocation by ETI must comply with those safety and quality requirements that can be imposed in accordance with the most recent advances in medical science. ETI must ensure that they do so comply. Transparency and follow-up Given the need for the allocation procedures to be transparent and objective, government in the participating countries must receive current and reliable information periodically – and, if necessary, on request – in order to facilitate monitoring of the entire organ allocation process and ensure that the allocation criteria and the safety and quality requirements are being applied. Government involvement This involvement will be constituted by ETI’s answerability to government in the participating countries under conditions still to be elaborated; these will include a periodic evaluation of how ETI is working. 4. Action items Given the above considerations and the need to take account of national regulatory frameworks, as well as the efforts directed at the implementation of appropriate measures to improve the existing opportunities for post mortal organ donation, we as ministers of health:

• promote the reporting within the respective domestic regulatory frameworks of all donor organs to ETI as the organization responsible – on the basis of the allocation criteria arrived at by consensus – for ensuring optimum allocation of donor organs; • request ETI – assuming a patient oriented allocation system within the respective domestic regulatory frameworks, in cooperation with experts and in line with the most recent advances in medical science – to present to government in the participating countries a set of basic principles for organ allocation internationally; • agree with ETI on what information, in what form, and how, government in the participating countries is to be supplied with; • enter discussion with ETI on how to shape government involvement; • promote discussion with and between the expert and professional organizations (in the first instance medical professional organizations) in the participating countries in order to achieve further clarity for patients eligible for transplantation; • request that ETI, operating according to the general principles and criteria specified in this document, cooperates with experts from the participating countries and, in close consultation with them, generates directives for the twinning agreements between the transplantation centers in the participating countries and similar institutions in other countries. This declaration was signed in November 2000 by: Brussels, The Minister of Consumer Affairs, Public Health and Environment of the Kingdom of Belgium, Magda Aelvoet Bonn, The Federal Minister of Health of the Federal Republic of Germany, Andrea Fischer Luxembourg, The Minister of Health of the Grand Duchy of Luxembourg, Georges Wohlfahrt The Hague, The Minister of Health, Welfare and Sport of the Kingdom of the Netherlands, Els Borst-Eilers Vienna, The Federal Minister of Labour, Health and Social Affairs of the Republic of Austria, Lore Hostasch Ljubljana, The Minister of Health of the Republic of Slovenia, Andrej Brucan

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1.2 Central office

General

In 2004, the development of the ENIS-i project was further confirmed. This lead to the introduction of the new module for immunological results of recipients on the waiting list in January 2005. This project furthermore involves a revision of the waiting list and transplant registration module of ENIS. Besides the allocation / registration department as well as the information department a lot of transplant centers are involved in this major project. The ENIS-i project will be finished in 2006, resulting in a modern ENIS, with up-to-date technology used.

A start has been made with electronic donor information supply: The Deutsche Stiftung Organtransplantation (DSO) in Germany in close collaboration with the Eurotransplant office has set up a modern transmission system to send donor data to Eurotransplant in an electronic way. This system was tested thoroughly during 2005 and was declared ready for implementation in 2006. The Dutch Transplant Foundation (NTS) has been working on an electronic transmission system called DPA (Donor Procedure Application), also in collaboration with the Eurotransplant office. This system was tested during 2005 and was in a far advanced developmental phase at the end of the year.

In November 2005 the Eurotransplant office was audited again for the maintenance of the ISO 9001:2000 certi- ficate. This audit ended with the positive finding that Eurotransplant is still compliant with the ISO standards.

In 2004, the medical administration has seen a reshuffling of tasks. A helpdesk was implemented and is manned daily from 8 AM till 5 PM. This helpdesk was implemented to answer to all the questions of the centers on the use of ENIS. Varying from questions regarding registration of recipients, registration of transplantations and the possibility to extract certain data from ENIS, run several reports and use the of the DataWareHouse. If questions are of a more technical aspect, the helpdesk will refer the customer to the technical support desk of Eurotransplant.

Quality management system

The Eurotransplant quality management system describes all processes within the Eurotransplant office. These processes are subdivided into different categories. In brief these are:

Customer-related processes Prognostic processes General processes

Waiting list management Recipient Follow up Legal requirements Donor registration Education of personnel Strategy and policy Allocation procedures Selection of suppliers Innovation Information supply Purchase of resources Internal auditing Relation (client) management Quality management Remote users support

During 2005, Eurotransplant was audited by the German Prüfungskommission of the Bundesärztekammer. The special aims of 2005’s audit were:

- HU allocation - Center oriented allocation - Allocation of combined organs - International organ exchange - Documentation of organ allocation in 2004 - Documentation of modified and accelerated allocation during the 2nd half of 2004.

The Prüfungskommission was overall satisfied with the Eurotransplant quality of work. No violations against the allocation rules were observed. The allocation procedures were documented as prescribed. In 2005, 26 internal audits were performed. This resulted in 13 initiatives for smaller adjustments and/or improve- ments and the initiative to complete adjustment of the description of the innovation procedure. These projects are still ongoing.

The registration of non conformities (as introduced in 2001) was continued in 2005. Non conformities include ‘mistakes’ made by our own coworkers or by transplant centers, donor centers or tissue typing laboratories and violations of the Eurotransplant allocation rules. Also, problems during the allocation process with tissue typing, donor management and procurement and transportation are registered in the system.

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In 2005, a total of 245 non conformities were reported and registered by ET co-workers. These non conformities can be subdivided into the following categories: - 128 were mistakes performed by our own coworkers (mostly administrative problems and problems with manual procedures). - 52 were non conformities of transplant centers. These non conformities vary from violation of the allocation rules in some cases to cases of very late reaction on an organ offer. - 47 were non conformities of donor centers. These include a too short allocation time (less than 6 hours) and errors in supplied donor information. - 9 were performed by tissue typing laboratories. In some cases problems with the length of time of cross match results reporting or HLA typing were registered. - 9 non conformities concerned logistic problems (transport problems with airlines and taxis).

13 of the non conformity cases were considered to be serious (4 by donor centers and 9 by transplant centers). Therefore, letters have been written to the centers involved.

Overall when looking at the year 2005, the quality system operated well. As compared to 2004, the number of reported non conformities has been stable (260 in 2004).

1.3 Advisory Committees

In 2005, the various Advisory Committees met 15 times and submitted 19 recommendations, of which the Board approved 16, rejected 2 and postponed 1. The composition of the various Advisory Committees as per December 31, 2005 was as follows:

KIDNEY ADVISORY COMMITTEE (ETKAC)

Name As of Remarks Prof.Dr. J. de Fijter, Leiden 01.2005 chairman, representative Board Prof.Dr. G. Mayer, Innsbruck 12.2000 representative Austria Prof.Dr. F. Mühlbacher, Vienna 09.1994 representative Austria Dr. P. Duhoux, Luxembourg 09.1994 representative Luxembourg Dr. K. Wissing, Brussels (BR) 01.2004 representative Belgium Prof.Dr. J-P. Squifflet, Brussels (LA) 09.1999 representative Belgium Prof.Dr. G. Offermann, Berlin 09.1994 representative Germany Dr. J. Küster, Hann. Münden 11.2004 representative Germany Prof.Dr. U. Heemann, Munich 01.2002 representative Germany Prof.Dr. U. Kunzendorf, Kiel 01.2002 representative Germany Dr. R. Hené, Utrecht 03.1998 representative the Netherlands Dr. J. Homan van der Heide, Groningen 04.2005 representative the Netherlands Dr. D. Kovac,˘ Ljubljana 12.1999 representative Slovenia Prof.Dr. F.H.J. Claas, Leiden (ETRL) 09.1994 representative TT Assembly Dr. J. de Boer, Eurotransplant 12.2005 secretary

LIVER ADVISORY COMMITTEE (ELAC)

Name As of Remarks Prof.Dr. J. Lerut, Brussels (LA) 10.2005 chairman, representative Board Prof.Dr. R. Steininger, Vienna 11.2004 representative Austria Dr. O. Detry, Liège 01.2000 representative Belgium Prof.Dr. M. Adler, Brussels (BR) 05.2004 representative Belgium Prof.Dr. P. Neuhaus, Berlin 09.1994 representative Germany Prof.Dr.N. Senninger, Münster 01.2004 representative Germany Prof.Dr. X. Rogiers, Hamburg 01.2002 representative Germany Dr. B. van Hoek, Leiden 07.2001 representative the Netherlands Prof.Dr. S. Markovic,˘ Ljubljana 01.2004 representative Slovenia Dr. T. Gerling, Eurotransplant 03.2001 secretary

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PANCREAS ADVISORY COMMITTEE (EPAC)

Name As of Remarks Prof.Dr. W. Schareck, Rostock 12.2005 chairman, representative Board Prof.Dr. P. Hengster, Innsbruck 11.2004 representative Austria Prof.Dr. J-P. Squifflet, Brussels (LA) 08.1994 representative Belgium Prof.Dr. R. Viebahn, Bochum 11.2004 representative Germany Prof.Dr. R.G. Bretzel, Giessen 09.1996 representative Germany Vacancy 12.2005 representative Germany Dr. J. Ringers, Leiden 04.1998 representative the Netherlands Prof.Dr. F.H.J. Claas, Leiden (ETRL) 08.1994 representative TT Assembly Dr. M. Slot, Eurotransplant 05.2005 secretary

THORACIC ADVISORY COMMITTEE (EThAC)

Name As of Remarks Prof.Dr. G. Laufer, Innsbruck 10.2001 chairman, representative Board Prof.Dr. A. Wasler, Graz 11.2001 representative Austria Prof.Dr. W. Klepetko, Vienna 05.2000 representative Austria Prof.Dr. M. Antoine, Brussels (BR) 01.2000 representative Belgium Dr. P. Evrard, Brussels (LA) 01.2004 representative Belgium Dr. B. Meiser, Munich 01.2000 representative Germany Prof.Dr. W. Mohr, Leipzig 01.2000 representative Germany Prof.Dr. H-G. Fieguth, Frankfurt 04.2002 representative Germany Prof.Dr. R. Hetzer, Berlin 04.2002 representative Germany Dr. N. de Jonge, Utrecht 01.2004 representative the Netherlands Dr. W. van der Bij, Groningen 06.2001 representative the Netherlands Dr. R. Blumauer, Ljubljana 07.2002 representative Slovenia Dr. J. Smits, Eurotransplant 07.2002 secretary

ORGAN PROCUREMENT COMMITTEE (OPC)

Name As of Remarks Prof.Dr. D. Ysebaert, Antwerp 10.2005 chairman, representative Board Dr. P. Wamser, Vienna 03.1995 representative TC's Austria Mr. L. Colenbie, Gent 01.2002 representative TC's Belgium Prof.Dr. G. Kirste, Neu-Isenburg 03.2004 representative DSO Germany Dr. D. Bösebeck, Munich 01.2002 representative TC's Germany Mr. W. Hordijk, Nijmegen 11.1998 representative TC’s NL Dr. M. Span,˘ Ljubljana 01.2004 representative Slovenia Prof.Dr. J-P. Squifflet, Brussels (LA) 01.2002 representative ETKAC Dr. O. Detry, Liège 01.2000 representative ELAC Dr. J. Ringers, Leiden 04.2002 representative EPAC Prof.Dr. M. Antoine, Brussels (BR) 06.1998 representative EThAC Prof.Dr. I. Doxiadis, Leiden (ETRL) 02.1998 representative TTAC Dr. M. Sukel, Eurotransplant 12.2005 secretary

COMPUTER SERVICES WORKING GROUP (CSWG)

Name As of Remarks Prof.Dr. F. Mühlbacher, Vienna 09.1995 chairman, representative Board + ETKAC Dr. R. Kramar, Wels 09.1995 representative Austria Mr. D. Van Hees, Leuven 03.2004 representative Belgium Dr. L. Fritsche, Berlin 01.2004 representative Germany Dr. A. Hoitsma, Nijmegen 09.1995 representative the Netherlands Dr. B. van Hoek 04.2002 representative ELAC Dr. W. van der Bij, Groningen 05.2002 representative EThAC Dr. S. Lems, Groningen 06.1996 representative TTAC Mr. W. van Zwet, Eurotransplant 11.2000 secretary

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TISSUE TYPING ADVISORY COMMITTEE (TTAC)

Name As of Remarks Prof.Dr. F.H.J. Claas, Leiden (ETRL) 09.1995 chairman, representative Board Prof.Dr. W. Mayr, Vienna 09.1995 representative Austria Prof.Dr. D. Latinne, Brussels (LA) 01.2000 representative Belgium Dr. F. Hentges, Luxembourg 09.1995 representative Luxembourg Prof.Dr. R. Wassmuth, Düsseldorf 01.2000 representative Germany Dr. C. Schönemann, Berlin 11.2002 representative Germany Dr. S. Lems, Groningen 09.1995 representative the Netherlands Dr. B. Vidan Jeras, Ljubljana 12.1999 representative Slovenia Prof.Dr. I.I.N. Doxiadis, Leiden (ETRL) 09.1995 secretary

ETHICS COMMITTEE (EC)

Name As of Remarks Prof.Dr. P. Schotsmans, Leuven 01.2001 chairman, representative Board Drs. M. Bos, The Hague 05.1995 vice-chairman, representative the Netherlands Dr. I. Kerremans, Gent 03.2004 representative Belgium Prof.Dr. B. Grabensee, Düsseldorf 11.2004 representative Germany Dr. W. Schaupp, Vienna 04.1998 representative Austria Dr. D. Rigler Pleterski, Ljubljana 01.2000 representative Slovenia Dr. K. Dijkstra, Eurotransplant 02.2005 secretary

FINANCIAL COMMITTEE (FC)

Name As of Remarks Prof.Dr. A.P.W.P. van Montfort 31.2003 chairman, representative Board Mag. O. Postl, Vienna 05.1995 representative Austria Prof.Dr. D. Ysebaert, Antwerp 05.1995 representative Belgium Prof.Dr. U. Albert, Kaiserslautern 01.2002 representative Germany W. van Zwet, Eurotransplant 01.1999 secretary

1.4 Recommendations approved

In 2005, the following recommendations were submitted by the Advisory Committees and approved by the Board of Eurotransplant International Foundation:

Kidney Advisory Committee (ETKAC) RKAC01.05* The guidelines on prevention of immunological complications after kidney transplantation (e.g. prospective HLA crossmatching and exclusion of unacceptable HLA antigens) should strictly be adhered to. The recipient center is responsible: a. for the selection of patients included in the ESP program taking current and historic sensitization into account; b. that final crossmatches, especially for sensitized patients, are performed in tissue typing laboratories that are also responsible for the patient’s histocompatibility data (also see RTTAC01.03).

Liver Advisory Committee (ELAC) RLAC01.05 The number of non-resident registrations for patients (either first or repeat) for a liver (re)transplant should not exceed 5% of the total number of transplantations (either first or repeat) by any center in the preceding year. RLAC02.05 In order to be eligible for status T2, patients with hepatocellular carcinoma (HCC) must have been listed actively on the waiting list for >365 days. Accepted means of HCC diagnosis are: • biopsy-proven HCC, or • AFP >400 ng/ml and one proof of a focal lesion >2 cm with or without arterial hypervascularization by either spiral CT, MRI or angiography, or • proof of a focal lesion >2 cm with or without arterial hypervascularization by two positive imaging techniques with either spiral CT, MRI or angiography.

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After >365 days active waiting on the ET liver waiting list, the transplant center can send a T2 request to the ET office. The request for T2 must include the report(s) of the PA or of the imaging procedure(s). At the time of T2 request this patient must be transplantable fulfilling the Milan criteria, i.e. either one tumor >2 cm to <5 cm in diameter or <3 tumors each <3 cm in diameter. Patients must be free of vascular invasion and extrahepatic metastases. The T2 status will be granted by the ET medical staff on the basis of an ‘exceptional case’ as proposed by the transplant center. RLAC03.05 All children <12 years of age are registered on the liver waiting list with data needed to calculate the MELD and PELD scores. Both must also be entered for future scientific analyses. The children receive a bonus score equivalent to MELD 22 used in the matching, if, at the time of listing, the calculated MELD score is <22. If, at the time of listing, the calculated MELD score is >22, then this calculated score is applied in the matching. If a transplant candidate <12 years of age with a bonus score of MELD 22 was not transplanted within 3 months after listing, then his bonus will be incremented automatically every 3 months equal to a 10% increase in probability of 3 months mortality on the waiting list, until the child is either transplanted or removed from the waiting list. Re-evaluation is only applicable for children for which the calculated bonus score is applied in the matching. MELD/PELD score data must both be entered at the time of initial registration on the waiting list, and at time of transplantation or removal from the waiting list. Regular evaluations of the bonus score concept in children within the first year of implementation are mandatory to evaluate the effect of the bonus score concept for pediatric transplant candidates <12 years of age. RLAC04.05 The current allocation algorithm for pediatric donor livers (<46 kg) should be changed with regard to HU and ACO patients: first, to HU pediatric patients then, to HU adult patients then, to ACO pediatric patients then, to ACO adult patients then, to elective pediatric patients (national > international) then, to elective adult patients (national > international)

RLAC05.05 Livers from pediatric donors should only be used in HU patients if the donor-to-recipient weight ratio is >0.5.

Pancreas Advisory Committee (EPAC) RPAC01.05 A ‘HIT’ program for highly immunized pancreas patients should be installed. All pancreas patients in ET can enter the program if they fulfill the following criteria: • Current serum samples must show antibody reactivity against the lymphocytes of more than 85% of the panel donors. The panel must consist of at least 50 cell suspensions. • This antibody reactivity must be due to allo-antibodies against HLA antigens. The reactivity of auto- antibodies should not contribute to this panel reactivity. • Patients can only be accepted in the ‘HIT’ program by the Eurotransplant Reference Laboratory (ETRL). The following rules will apply to the program: • For every pancreas donor in the donor area of the cooperating transplant programs, a cross match procedure should be carried out for all ET patients accepted in the HIT program. • Allocation will be AB0 compatible (i.e. AB0-A to A and AB; AB0-B to B and AB; AB0-AB to AB; AB0-0 to 0, A, B and AB). • The pancreas offer to an eligible ‘HIT’ patient is mandatory to all participating transplant centers and will prevail over SU patients (but not ACO patients). The ‘HIT’ program will be evaluated after one year.

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Thoracic Advisory Committee (EThAC) RThAC01.05 The number of non-resident registrations for patients (either first or repeat) for a thoracic organ (re)transplant should not exceed 5% of the total number of transplantations (either first or repeat) by this center in the preceding year. RThAC02.05 Hearts should be allocated: first to International HU patients (access to foreign country list if negative HU balance) then to National HU patients and International HU patients (access to foreign country list if negative total balance) then to National U patients (only in Germany) then to National Approved Combined Organ (ACO) patients then to National elective patients then to International HU patients then to International U patients (only in Germany) then to International ACO patients then to International elective patients. This allocation model will be evaluated one year after implementation.

The international HU and the German HU status are assigned according to the German HU criteria; this status is only granted after a positive advice by the majority of international auditors. However, the national HU status in Austria, Belgium, Slovenia and the Netherlands can be assigned by the treating physician according to national criteria.

RThAC03.05 A center profile should be created in order to allow the refinement of the desired donor profile. The following additional items should be incorporated: • virus hepatitis (HBsAg+, anti-HBcAb+ or anti-HCV-Ab+); • sepsis with positive blood culture; • meningitis; • malignant tumor; • IV drug abuse.

RThAC04.05 Hearts should be allocated first to ET compatible (AB0-0 to AB0-0 and -B) patients and then to AB0 compatible (AB0-0 to AB0-0,-B, -A and -AB) patients.

RThAC05.05 Lungs (and Heart-Lungs) should be allocated : first to International HU patients (access to foreign country list if negative HU balance and negative total balance) then to National HU patients and International HU patients (access to foreign country list if negative total balance) then to National U patients (only in Germany) then to National Approved Combined Organ (ACO) patients then to National elective patients then to International HU patients then to International U patients (only in Germany) then to International ACO patients then to International elective patients.

RThAC06.05 Lungs (and Heart-Lungs) should be allocated first to ET compatible (AB0-0 to AB0-0 and -B) patients and then to AB0 compatible (AB0-0 to AB0-0,-B, -A and -AB) patients.

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Computer Services Working Group (CSWG) RCSWG01.05 Due to the limited use by external users and the associated costs the CSWG recommends to phase out the use of the DataWareHouse (DWH) for external users and to make the data available by means of extended extracts in ENIS.

Financial Committee (FC) RFC01.05 The FC recommends to approve the ET Annual Accounts 2005. RFC03.05 The FC recommends to approve the Eurotransplant budget proposal 2006. *Submitted by the end of 2005, but accepted by the beginning of 2006. E

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2. Eurotransplant: donation, waiting list and transplants

Table 2.1 Number of deceased organ donors, per country of origin and used for a transplant, from 2001 to 2005

donor country population 2001 2002 2003 2004 2005 pmp 2004/2005 (millions)

Austria 8.2 189 195 187 181 200 24.4 10.5% Belgium 10.4 222 223 248 220 237 22.8 7.7% Germany 82.4 1051 1001 1110 1052 1185 14.4 12.6% Luxembourg 0.5 53 8136.0 200.0% Netherlands 16.4 187 202 223 228 217 13.2 -4.8% Slovenia 2.0 23 35 28 36 21 10.5 -41.7% total ET 119.9 1677 1659 1804 1718 1863 15.5 8.4% non ET – 55 88 91 75 82 9.3% total 1732 1747 1895 1793 1945 8.5%

Table 2.2 Number of deceased organ donors, used for a transplant, by organ from 2001 to 2005

year of registration 2001 2002 2003 2004 2005 2004/2005 organ donors, total 1732 1747 1895 1793 1945 8.5% organ donors, by organ kidney 1641 1596 1756 1650 1753 6.2% heart 601 605 594 570 562 -1.4% lung 249 354 381 407 438 7.6% liver 1077 1095 1200 1192 1302 9.2% pancreas 313 343 378 346 305 -11.8% ENumber of deceased organ donors, used for a transplant, by organ and donor country from 2001 to 2005 kidney 2001 2002 2003 2004 2005 2004/2005 Austria 182 192 179 177 195 10.2% Belgium 206 196 231 197 196 -0.5% Germany 1021 972 1083 1013 1121 10.7% Luxembourg 5 3 8 1 3 200.0% Netherlands 186 194 219 220 212 -3.6% Slovenia 23 33 28 35 20 -42.9% total ET 1623 1590 1748 1643 1747 6.3% non ET 18 6 8 7 6 -14.3% total 1641 1596 1756 1650 1753 6.2% heart 2001 2002 2003 2004 2005 2004/2005 Austria 70 79 70 69 61 -11.6% Belgium 91 95 92 83 75 -9.6% Germany 374 348 341 355 365 2.8% Luxembourg 4 0 5 1 1 % Netherlands 42 49 58 37 36 -2.7% Slovenia 12 21 12 7 9 28.6% total ET 593 592 578 552 547 -0.9% non ET 8 13 16 18 15 -16.7% total 601 605 594 570 562 -1.4% liver 2001 2002 2003 2004 2005 2004/2005 Austria 126 143 133 129 139 7.8% Belgium 192 176 206 180 203 12.8% Germany 608 609 701 724 813 12.3% Luxembourg 4 3 7 1 2 100.0% Netherlands 106 112 108 115 115 % Slovenia 18 21 21 24 15 -37.5% total ET 1054 1064 1176 1173 1287 9.7% non ET 23 31 24 19 15 -21.1% total 1077 1095 1200 1192 1302 9.2% 63082 bw NW3 29-06-2006 13:22 Pagina 28

Table 2.2 Number of deceased organ donors, used for a transplant, by organ from 2001 to 2005

year of registration 2001 2002 2003 2004 2005 2004/2005 lung 2001 2002 2003 2004 2005 2004/2005 Austria 40 62 51 50 45 -10.0% Belgium 47 47 63 64 57 -10.9% Germany 124 175 181 209 223 6.7% Luxembourg 0 0 1 0 1 % Netherlands 24 28 34 47 54 14.9% Slovenia 6 12 9 4 9 125.0% total ET 241 324 339 374 389 4.0% non ET 8 30 42 33 49 48.5% total 249 354 381 407 438 7.6 pancreas 2001 2002 2003 2004 2005 2004/2005 Austria 27 44 32 36 31 -13.9% Belgium 56 75 93 62 50 -19.4% Germany 190 181 198 205 186 -9.3% Luxembourg 4 1 3 0 0 % Netherlands 33 26 30 32 32 % Slovenia 3 4 9 5 6 20.0% total ET 313 331 365 340 305 -10.3% non ET 0 12 13 6 0 -100.0% total 313 343 378 346 305 -11.8%

Table 2.3 Demographic data on deceased organ donors, used for a transplant from 2001 to 2005

age 2001 2002 2003 2004 2005 % 2004/2005 0-15 98 91 103 75 91 4.2% 21.3% 16-55 1133 1141 1225 1152 1157 64.2% 0.4% 56-64 280 290 305 303 333 16.9% 9.9% >=65 221 222 262 263 364 14.7% 38.4% total 1732 1747 1895 1793 1945 100.0% 8.5%

gender 2001 2002 2003 2004 2005 % 2004/2005 female 756 746 858 825 891 46.0% 8.0% male 976 1001 1037 968 1054 54.0% 8.9% total 1732 1747 1895 1793 1945 100.0% 8.5%

blood group 2001 2002 2003 2004 2005 % 2004/2005 A 743 781 858 751 850 41.9% 13.2% AB 91 79 85 100 127 5.6% 27.0% B 192 191 192 194 213 10.8% 9.8% O 706 696 760 748 755 41.7% 0.9% total 1732 1747 1895 1793 1945 100.0% 8.5%

cause of death 2001 2002 2003 2004 2005 % 2004/2005 accident 545 495 498 443 458 24.7% 3.4% natural 1102 1160 1289 1257 1313 70.1% 4.5% suicide 63 71 69 51 59 2.8% 15.7% other 22 21 39 42 115 2.3% 173.8% total 1732 1747 1895 1793 1945 100.0% 8.5%

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Table 2.4a Type of deceased organ donation, used in a transplant, from 2001 to 2005

2001 2002 2003 2004 2005 % 2004/2005 kidney donor SOD 504 475 515 454 467 26.6% 2.9% MOD 1137 1121 1241 1196 1286 73.4% 7.5% kidney donor total 1641 1596 1756 1650 1753 100.0% 6.2% non-kidney donor SOD 78 126 115 115 170 88.5% 47.8% MOD 13 25 24 28 22 11.5% -21,4% non-kidney donor total 91 151 139 143 192 100.0% 34.3% total 1732 1747 1895 1793 1945100.0% 8.5%

Table 2.4b Type of deceased organ donation, used in a transplant, by country of donor origin for 2005

kidney donor non-kidney donor SOD MOD % MOD total SOD MOD % MOD total total %

Austria 56 139 71.3% 195 3240.0% 5 200 10.3% Belgium 24 172 87.8% 196 32 9 22.0% 41 237 12.2% Germany 284 837 74.7% 1121 56 8 12.5% 64 1185 60.9% Luxembourg 1 2 66.7% 3 0 0 0.0% 0 3 0.2% Netherlands 92 120 56.6% 212 4 1 20.0% 5 217 11.2% Slovenia 4 16 80.0% 20 1 0 0.0% 1 21 1.1% non ET 6 0 0.0% 6 74 2 2.6% 76 82 4.2% total 467 1286 73.4% 1753 170 2211.5% 1921945 100.0%

SOD - single organ donor MOD - multiple organ donor - a donor from which more than one organ type has been used in a transplant

Table 2.4c Non-heart beating donors 2005 NHB Category Austria Belgium Netherlands total I - dead on arrival 0 0 0 0 II- unsuccesful resuscitation 1 3 15 19 III - awaiting heart arrest 1 5 95 101 IV - heart arrest in brain death donor 0 1 2 3 total 2 9 112 123

Table 2.4d Kidney transplants from NHB donors 2005 Donor country Type of transplant Recipient country Austria Belgium Netherlands Total Kidney Austria 4015 Belgium 011314 Netherlands 0 3 185 188 Kidney total 4 14 178 194 Type of transplant Recipient country Austria Belgium Netherlands Total Liver Belgium 0415 Germany 0011 Netherlands 0 0 20 20 Liver total 0 4 22 26 Type of transplant Recipient country Austria Belgium Netherlands Total Lung Netherlands 0044 Lung total 0044 Type of transplant Recipient country Austria Belgium Netherlands Total Pancreas Belgium 0112 Pancreas total 0112

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Table 2.5 Active Eurotransplant waiting list, by organ, as per December 31, from 2001 to 2005

waiting list type composition 2001 2002 2003 2004 2005 2004/2005 Heart heart 419 418 556 713 864 21.2% heart + liver 0 1 0 0 0 0.0% heart + liver + lung 0 1 0 0 0 0.0% heart + lung 43 42 45 54 64 18.5% kidney + heart 5 4 12 15 18 20.0% Heart total 467 466 613 782 946 21.0% waiting list type composition 2001 2002 2003 2004 2005 2004/2005 Kidney kidney 12268 12371 12132 11960 11515 -3.7% kidney + heart 5 4 12 15 18 20.0% kidney + liver 32 58 6 0 70 60 -14.3% kidney + liver + pancreas 0 1 2 2 1 -50.0% kidney + pancreas 144 219 176 203 217 6.9% kidney + lung 1 0 0 1 3 200.0% Kidney total 12450 12653 12382 12251 11814 -3.6% waiting list type composition 2001 2002 2003 2004 2005 2004/2005 Liver liver 1042 1296 1644 1959 2066 5.5% heart + liver 0 1 0 0 0 0.0% heart + liver + lung 0 1 0 0 0 0.0% kidney + liver 32 58 60 70 60 -14.3% kidney + liver + pancreas 0 1 2 2 1 -50.0% liver + lung 7 3 4 2 3 50.0% liver + pancreas 12 6 4 2 4 100.0% Liver total 1093 1366 1714 2035 2134 4.9% waiting list type composition 2001 2002 2003 2004 2005 2004/2005 Lung lung 422 459 513 589 668 3.4% heart + liver + lung 0 1 0 0 0 0.0% heart + lung 43 42 45 54 64 18.5% liver + lung 7 3 4 2 3 50.0% kidney + lung 1 0 0 1 3 200.0% Lung total 473 505 562 646 738 14.2% waiting list type composition 2001 2002 2003 2004 2005 2004/2005 Pancreas pancreas 70 64 75 74 59 -20.3% kidney + liver + pancreas 0 1 2 2 1 -50.0% kidney + pancreas 144 219 176 203 217 6.9% liver + pancreas 12 6 4 2 4 100.0% Pancreas total 226 290 257 281 281 0.0%

Table 2.6 Registrations on the Eurotransplant waiting list, by organ from 2001 to 2005

All registration events 2001 2002 2003 2004 2005 2004/2005 kidney 5183 5340 5132 5409 5214 -3.6% heart 921 894 1083 1050 1061 1.0% lung 481 603 626 695 725 4.3% liver 2025 2195 2419 2369 2306 -2.7% pancreas 359 435 366 379 364 -4.0% New registrations 2001 2002 2003 2004 2005 2004/2005 kidney 4412 4525 4362 4569 4359 -4.6% heart 896 865 1052 1018 1033 1.5% lung 455 566 586 660 683 3.5% liver 1766 1974 2131 2087 1998 -4.3% pancreas 322 373 299 325 304 -6.5% Re - registrations 2001 2002 2003 2004 2005 2004/2005 kidney 771 815 770 840 855 1.8% heart 25 29 31 32 28 -12.5% lung 26 37 40 35 42 20.0% liver 259 221 288 282 308 9.2% pancreas 37 62 67 54 60 11.1%

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Table 2.7 Number of transplanted organs, by organ, by donor type from 2001 - 2005

deceased 2001 2002 2003 2004 2005 2004/2005 kidney 3154 3067 3385 3206 3406 6.2% heart 601 604 593 571 563 -1.4% lung 469 666 715 773 839 8.5% liver 1114 1136 1264 1262 1364 8.1% pancreas 311 344 378 346 304 -12.1% total 5649 5817 6335 6158 6476 5.2%

living 2001 2002 2003 2004 2005 2004/2005 kidney 619 699 655 803 864 7.6% heart (domino) 2 0 0 1 1 0.0% liver (partial and domino) 124 129 133 106 121 14.2% total 745 828 788 910 986 8.4%

Table 2.8 Transplants from 2001 - 2005 Deceased Donors 2001 2002 2003 2004 2005 2004/2005 Heart 573 572 562 537 531 -1.1% Kidney 2785 2769 3020 2866 3094 8.0% Kidney both 28 18 33 22 22 0.0% Single lung 79 94 97 99 103 4.0% Both lungs 170 258 282 316 345 9.2% Liver 1004 1007 1086 1058 1196 13.0% Split liver 72 81 129 146 119 -18.5% Heart + kidney 7 8 7 13 10 -23.1% Heart + both lungs 21 24 21 18 21 16.7% Heart + liver 0 0 1 3 1 -66.7% Kidney + both lungs 1 1 0 1 1 0.0% Kidney + liver 29 37 32 42 42 0.0% Kidney + split liver 3 2 8 5 2 -60.0% Liver + both lungs 3 2 4 2 1 -50.0% Split liver + both lungs 0 1 0 0 0 – Heart + both lungs + kidney 0 0 1 0 0 – Heart + both lungs + liver 0 0 1 0 0 – Pancreas 19 39 35 34 31 -8.8 % Pancreas + kidney 264 208 247 229 209 -8.7 % Pancreas + both kidneys 2 0 0 1 0 -100.0 % Pancreas + liver 2 5 2 6 2 -66.7 % Pancreas + liver + kidney 0 0 1 0 1 – Pancreas islets 18 61 51 38 34 -10.5 % Pancreas islets + liver 1 1 0 0 0 – Pancreas islets + kidney 5 4 3 4 2 -50.0 % Total (deceased donors) transplants 5086 5192 5623 5440 5767 6.01% Living Donors 2001 2002 2003 2004 2005 2004/2005 Heart (domino) 2 0 0 1 1 0.0% Kidney 619 699 655 803 864 7.6% Liver (partial and domino) 124 129 133 106 121 14.2% Total (living donors) transplants 745 828 788 910 986 8.4% All donors 2001 2002 2003 2004 2005 2004/2005 Total transplants 5831 6020 6411 6350 6753 6.3%

Table 2.9 Mortality on the Eurotransplant Waiting List, from 2001 - 2005 2001 2002 2003 2004 2005 2004/2005 kidney 595 621 648 670 565 -15.7% heart 203 178 194 222 213 -4.1% lung 123 112 118 147 145 -1.4% liver 304 363 410 388 456 17.5% pancreas 30 26 20 22 17 -22.7% total 1255 1300 1390 1449 1396 -3.7%

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3. Kidney: donation, waiting lists, and transplants

Table 3.1 Cadaveric donors / kidneys in Eurotransplant in 2005

Donors Deceased Donors Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total all donors 210 262 1255 3 264 22 2016 233 2249 not kidney donors 4144100059 193 252 kidney donors 206 248 1214 3 264 22 1957 40 1997 kidney donors not used 11 52 93 0 52 2 210 34 244 one kidney used 717591142100 4 104 two kidneys used 188 179 1062 2 198 18 1647 2 1649 total kidney donors used 195 196 1121 3 212 20 1747 6 1753

Kidneys Deceased Donors Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total kidneys reported 410 490 2424 6 526 44 3900 60 3960 kidneys not procured 18 65 115 0 54 4 256 30 286 kidneys procured 392 425 2309 6 472 40 3644 30 3674 kidneys not transplanted 9501261622250 22 272 kidneys transplanted 383 375 2183 5 410 38 3394 8 3402

Table 3.2 Active kidney transplant waiting list as per December 31, 2005 - characteristics

Type of transplant Austria Belgium Germany Luxembourg Netherlands Slovenia total % kidney 795 924 8644 11 1060 81 11515 97.5% kidney+heart 43 1100018 0.2% Kkidney+liver 3 9 47 0 1 0 60 0.5% kidney+liver+pancreas 0 1 0 0 0 0 1 0.0% kidney+lung 0 0 3 0 0 0 3 0.0% kidney+pancreas 24 18 148 0 27 0 217 1.8% total 826 955 8853 11 1088 81 11814 100.0%

Table 3.3 Active kidney only transplant waiting list as per December 31 - characteristics

blood group % PRA current sequence waiting time (years)

not pre year A AB B O 0-5% 6-84% 85-100% reported first repeat emptive 0-1 2-4 5+

2005 4429 210 1311 5565 10341 1006 134 34 9596 1919 286 2699 5523 3007 % 38.5% 1.8% 11.4% 48.3% 89.8% 8.7% 1.2% 0.3% 83.3% 16.7% 2.5% 23.4% 48.0% 26.1% 2004 4627 249 1346 5738 10698 1108 113 41 10057 1903 257 2911 5783 3009 % 38.7% 2.1% 11.3% 48.0% 89.4% 9.3% 0.9% 0.3% 84.1% 15.9% 2.1% 24.3% 48.4% 25.2% 2003 4677 270 1306 5879 10851 1141 117 23 10248 1884 226 3021 5895 2990 % 38.6% 2.2% 10.8% 48.5% 89.4% 9.4% 1.0% 0.2% 84.5% 15.5% 1.9% 24.9% 48.6% 24.6% 2002 4861 275 1297 5938 11004 1196 110 61 10449 1922 196 3236 6040 2899 % 39.3% 2.2% 10.5% 48.0% 88.9% 9.7% 0.9% 0.5% 84.5% 15.5% 1.6% 26.2% 48.8% 23.4% 2001 4887 283 1258 5839 10921 1194 101 52 10396 1872 205 3226 6032 2805 % 39.8% 2.3% 10.3% 47.6% 89.0% 9.7% 0.8% 0.4% 84.7% 15.3% 1.7% 26.3% 49.2% 22.9% 2000 4844 264 1268 5917 10880 1286 104 23 10355 1938 144 3430 5972 2747 % 39.4% 2.1% 10.3% 48.1% 88.5% 10.5% 0.8% 0.2% 84.2% 15.8% 1.2% 27.9% 48.6% 22.3%

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Table 3.4 Kidney transplants characteristics - 2005

Deceased donor kidney transplants type of transplant Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total % kidney only 336 318 2001 9 399 28 3091 3 3094 91.5% kidney en bloc 0 11 9 0 0 0 20 2 22 0.7% kidney + pancreas 26 20 145 0 20 0 211 0 211 6.2% kidney + heart 2 2 6 0 0 0 10 0 10 0.3% kidney + both lungs 0 0 1 0 0 0 1 0 1 0.0% kidney en bloc + whole liver 0 1 0 0 0 0 1 0 1 0.0% kidney + split liver 0 1 1 0 0 0 2 0 2 0.1% kidney +whole liver 7 5 26 0 3 0 41 0 41 1.2% kindey + pancreas + whole liver 0 0 1 0 0 0 1 0 1 0.0% total 371 358 2190 9 422 28 3378 5 3383 100.0%

Kidney only transplant (including kidney en bloc) HLA - A, B, DR mismatches Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total % 0 36 36 339 0 62 2 475 0 475 15.2% 1 19 32 143 0 35 3 232 0 232 7.4% 2 66 93 476 3 116 9 763 0 763 24.5% 3 114 137 513 5 118 9 896 0 896 28.8% 4 72 27 284 1 41 5 430 0 430 13.8% 5 25 3 171 0 18 0 217 0 217 7.0% 6 1 1 55 0 5 0 62 0 62 2.0% not calculated 3 0 29 0 4 0 36 5 41 1.3% total 336 329 2010 9 399 28 3111 5 3116 100.0%

blood group Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total % A 152 139 888 4 167 11 1361 0 1361 43.7% AB 27 20 165 0 29 4 245 2 247 7.9% B 48 33 252 0 38 2 373 1 374 12.0% O 109 137 705 5 165 11 1132 2 1134 36.4% total 336 329 2010 9 399 28 3111 5 3116 100.0%

PRA Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total % 0-5% 298 293 1853 8 364 25 28410 2841 91.2% 6-84% 34 35 137 1 32 3 242 0 242 7.8% 85-100% 4 1 20 0 3 0 28 0 28 0.9% not reported 0 0 0 0 0 0 0 5 5 0.2% total 336 329 2010 9 399 28 3111 5 3116 100.0%

waiting time (months) Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total % 0-5 11 8 26 0 1 1 47 1 48 1.5% 6-11 28 26 33 0 6 0 93 0 93 3.0% 12-23 64 74 125 0 49 3 315 0 315 10.1% 24-59 195 184 598 6 233 1 5 1231 0 1231 39.5% 60 + 34 24 1222 3 102 9 1394 0 1394 44.7% pre emptive 4 13 6 0 8 0 31 4 35 1.1% total 336 329 2010 9 399 28 3111 5 3116 100.0%

sequence Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total % first 335 327 1991 9 394 28 3084 5 3089 99.1% repeat 1 2 19 0 5 0 27 0 27 0.9% total 336 329 2010 9 399 28 3111 5 3116 100.0%

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Table 3.5 Living donor kidney transplants - kidney only - 2005

kidney only Austria Belgium Germany Netherlands total % related 24 26 301 148 499 57.8% non related 11 6 221 127 365 42.2% total 35 32 522 275 864 100.0%

Related Austria Belgium Germany Netherlands total % brother / sister 9 10 84 52 155 31.1% father 6 4 60 32 102 20.4% mother 8 9 120 41 178 35.7% son / daughter 1 2 14 15 32 6.4% grand father / - mother 0 0 4 1 5 1.0% grandchild 0 0 1 0 1 0.2% uncle / aunt 0 0 9 4 13 2.6% nephew / niece 0 1 9 2 12 2.4% blood related: NOS * 0 0 0 1 1 0.2% total 24 26 301 148 499 100.0%

* Not otherwise specified

Non related Austria Belgium Germany Netherlands total % spouse 8 6 185 70 269 73.7% other 3 0 36 57 96 26.3% total 11 6 221 127 365 100.0%

Figure 3.1 Dynamics of the Eurotransplant kidney transplant waiting list and transplants between 1969 and 2005 14000 T

12000

10000

8000

6000

4000

2000

0 1969 1971 1973 1975 1977 1979 1981 1983 1985 1987 1991 1993 1995 1997 1998 1999 2000 2001 2002 2003 2004 2005

Kidney waiting list 450 892 1147 1200 934 1929 2135 2928 5150 6740 8376 9418 10510 11324 11975 12313 12524 12450 12653 12382 12251 11814

Living donor transplants 9 5 11 33 33 33 53 108 150 161 129 127 212 411 526 579 569 617 697 646 796 864

Cadaveric donor transplants 102 228 454 583 800 1050 1263 1645 1965 2665 3395 3293 3064 3110 3068 3050 3145 3121 3047 3352 3185 3383

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4. Thoracic organs: donation, waiting lists, and transplants

Table 4.1 Deceased donors / hearts in Eurotransplant in 2005

Donors Deceased Donors Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total all donors 210 262 1255 3 264 22 2016 233 2249 not heart donors 106 120 640 1 151 6 1024 124 1148 heart donors 104 142 615 2 113 16 992 109 1101 heart donors not used 43 67 250 1 77 7 445 94 539 total heart donors used 61 75 365 1 36 9 547 15 562

Hearts Donor country Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total heart reported 104 142 615 2 113 16 992 109 1101 heart not produced 19 31 104 1 11 3 169 84 253 hearts produced 85 111 511 1 102 13 823 25 848 hearts not transplanted 24 36 146 0 66 4 276 10 286 hearts transplanted 61 75 365 1 36 9 547 15 562

Table 4.2 Deceased donors / lungs in Eurotransplant in 2005

Donors Deceased Donors Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total all donors 210 262 1255 3 264 22 2016 233 2249 not lung donors 130 167 829 2 183 8 1319 109 1428 Tlung donors 80 95 426 1 81 14 697 124 821 lung donors not used 35 38 203 0 27 5 308 75 383 one lung used 332415036 5 41 two lungs used 42 54 199 0 49 9 353 44 397 total lung donors used 45 57 223 1 54 9 389 49 438

Lungs Donor country Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total lungs reported 159 188 836 2 156 28 1369 240 1609 lungs not procured 66 69 377 0 49 10 571 138 709 lungs procured 93 119 459 2 107 18 798 102 900 lungs not transplanted 683714056 9 65 lungs transplanted 87 111 422 1 103 18 742 93 835

Table 4.3 Active heart transplant waiting list as per December 31, 2005 - characteristics

type of transplant Austria Belgium Germany Netherlands Slovenia total % heart 72 26 702 50 14 864 91.3% heart+lung 4 3 53 4 0 64 6.8% kidney+heart 4 3 11 0 0 18 1.9% total 80 32 766 54 14 946 100.0%

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Table 4.4 Active cadaveric heart only transplant waiting list as per December 31, 2005 - characteristics

blood group sequence waiting time (months) year A AB B O first repeat 0-5 6-11 12-23 24 +

2005 419 17 106 322 849 15 346 190 218 110 % 48.5% 2.0% 12.3% 37.3% 98.3% 1.7% 40.0% 22.0% 25.2% 12.7% 2004 360 7 77 269 700 13 321 179 168 45 % 50.5% 1.0% 10.8% 37.7% 98.2% 1.8% 45.0% 25.1% 23.6% 6.3% 2003 270 12 60 214 538 18 319 144 80 13 % 48.6% 2.2% 10.8% 38.5% 96.8% 3.2% 57.4% 25.9% 14.4% 2.3% 2002 215 16 44 143 404 14 255 110 48 5 % 51.4% 3.8% 10.5% 34.2% 96.7% 3.3% 61.0% 26.3% 11.5% 1.2% 2001 214 21 35 149 408 11 238 123 45 13 % 51.1% 5.0% 8.4% 35.6% 97.4% 2.6% 56.8% 29.4% 10.7% 3.1% 2000 205 15 56 209 476 9 283 107 78 17 % 42.3% 3.1% 11.5% 43.1% 98.1% 1.9% 58.4% 22.1% 16.1% 3.5%

Table 4.5 Active heart + lung transplant waiting list as per December 31, 2005 - characteristics

type of transplant Austria Belgium Germany Netherlands total % heart+lung 4 3 53 4 64 100.0% total 4 3 53 4 64 100.0%

Table 4.6 Active heart + lung only transplant waiting list as per December 31 - characteristics

blood group sequence waiting time (months) year A AB B O first repeat 0-5 6-11 12-23 24 +

2005 25 1 6 32 64 0 16 12 17 19 % 39.1% 1.6% 9.4%50.0% 100.0% 0.0% 25.0% 18.8% 26.6% 29.7% 2004 24 2 4 24 54 0 17 11 15 11 % 44.4% 3.7% 7.4% 44.4% 100.0% 0.0% 31.5% 20.4% 27.8% 20.4% 2003 16 2 3 24 45 0 11 14 9 11 % 35.6% 4.4% 6.7% 53.3% 100.0% 0.0% 24.4% 31.1% 20.0% 24.4% 2002 12 3 4 23 42 0 8 11 9 14 % 28.6% 7.1% 9.5% 54.8% 100.0% 0.0% 19.0% 26.2% 21.4% 33.3% 2001 18 0 2 23 43 0 18 6 6 13 % 41.9% 0.0% 4.7% 53.5% 100.0% 0.0% 41.9% 14.0% 14.0% 30.2% 2000 15 1 2 24 42 0 13 8 4 17 % 35.7% 2.4% 4.8% 57.1% 100.0% 0.0% 31.0% 19.0% 9.5% 40.5%

Table 4.7 Active lung transplant waiting list as per December 31, 2005 - characteristics

type of transplant Austria Belgium Germany Netherlands total % lung 69 57 434 108 668 90.5% heart+lung 4 3 53 4 64 8.7% kidney + lung 0 0 3 0 3 0.4% liver+lung 0 0 2 1 3 0.4% total 73 60 492 113 738 100.0%

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Table 4.8 Active lung only transplant waiting list as per December 31 - characteristics

blood group sequence waiting time (months) year A AB B O first repeat 0-5 6-11 12-23 24 +

2005 247 16 74 331 644 24 252 140 146 130 % 37.0% 2.4% 11.1% 49.6% 96.4% 3.6% 37.7% 21.0% 21.9% 19.5% 2004 207 13 71 298 567 22 240 130 119 100 % 35.1% 2.2% 12.1% 50.6% 96.3% 3.7% 40.7% 22.1% 20.2%17.0% 2003 158 15 64 276 496 17 198 124 124 67 % 30.8% 2.9% 12.5% 53.8% 96.7% 3.3% 38.6% 24.2% 24.2% 13.1% 2002 151 8 39 261 449 10 201 114 92 52 % 32.9% 1.7% 8.5% 56.9% 97.8% 2.2%43.8% 24.8% 20.0% 11.3% 2001 149 9 38 226 410 12 146 112 94 70 % 35.3% 2.1% 9.0% 53.6% 97.2%2.8% 34.6% 26.5% 22.3%16.6% 2000 139 15 26 193 363 10 143 81 107 42 % 37.3% 4.0% 7.0% 51.7%97.3% 2.7% 38.3%21.7% 28.7% 11.3%

Table 4.9 Heart transplants 2005 - characteristics

Deceased donor heart transplants type of transplant Austria Belgium Germany Netherlands Slovenia non ET total % heart only 52 67 374 25 5 8 531 94.3% kidney + heart 2 2 6 0 0 0 10 1.8% heart + both lungs 1 1 15 4 0 0 21 3.7% heart + whole liver 0 0 1 0 0 0 1 0.2% total 55 70 396 29 5 8 563 100.0%

Heart only transplant blood group Austria Belgium Germany Netherlands Slovenia non ET total % A 29 29 175 15 3 3 254 47.8% AB 1 5 25 1 0 3 35 6.6% B 7 10 51 3 0 0 71 13.4% O 15 23 123 6 2 2 171 32.2% total 52 67 374 25 5 8 531 100.0%

waiting time (months) Austria Belgium Germany Netherlands Slovenia non ET total % 0-5 29 43 235 7 1 8 323 60.8% 6-11 13 16 55 7 2 0 93 17.5% 12-23 8 6 55 7 0 0 76 14.3% 24-59 2 2 29 4 2 0 39 7.3% total 52 67 374 25 5 8 531 100.0%

sequence Austria Belgium Germany Netherlands Slovenia non ET total % first 47 66 369 25 5 8 520 97.9% repeat 5 1 5 0 0 0 11 2.1% total 52 67 374 25 5 8 531 100.0%

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Table 4.10 Heart + lung transplants 2005 - characteristics

Heart + lung only transplant blood group Austria Belgium Germany Netherlands total % A 1 1 10 3 15 71.4% AB 0 0 1 0 1 4.8% O 0 0 4 1 5 23.8% total 1 1 15 4 21 100.0%

waiting time (months) Austria Belgium Germany Netherlands total % 0-5 1 1 14 1 17 81.0% 6-11 0 0 0 2 2 9.5% 12-23 0 0 1 0 1 4.8% 24-59 0 0 0 1 1 4.8% total 1 1 15 4 21 100.0%

sequence Austria Belgium Germany Netherlands total % first 1 1 15 4 21 100.0% total 1 1 15 4 21 100.0%

Figure 4.1 Dynamics of the Eurotransplant heart waiting list and transplants between 1991 and 2005

1000

900

800

700

600

500

400

300

200

100

0 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

Active waiting list 499 552 672 723 709 744 744 721 609 489 424 423 568 728 882

Heart transplants 806 753 773 696 732 759 782 759 708 623 596 580 570 553 542

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Table 4.11 Lung transplants 2005 - characteristics

Deceased donor lung transplants

type of transplant Austria Belgium Germany Netherlands non ET total % single lung 22 19 55 7 0 103 21.8% both lungs 7 42 192 43 2 346 73.3% kidney + both lungs 0 0 1 0 0 1 0.2% both lungs + whole liver 0 1 0 0 0 1 0.2% both lungs + heart 1 1 15 4 0 21 4.4% total 90 63 263 54 2 472 100.0%

lung only transplant

blood group Austria Belgium Germany Netherlands non ET total % A 37 25 109 20 1 192 42.8% AB 9 2 21 2 0 34 7.6% B 9 7 36 10 0 62 13.8% O 34 27 81 18 1 161 35.9% total 89 61 247 50 2 449 100.0%

waiting time (months) Austria Belgium Germany Netherlands non ET total % 0-5 62 33 119 20 2 236 52.6% 6-11 22 10 51 13 0 96 21.4% 12-23 4 10 44 9 0 67 14.9% 24-59 1 8 32 8 0 49 10.9% 60 + 0 0 1 0 0 1 0.2% total 89 61 247 50 2 449 100.0%

sequence Austria Belgium Germany Netherlands non ET total % first 87 59 242 50 2 440 98.0% repeat 2 2 5 0 0 9 2.0% total 89 61 247 50 2 449 100.0%

Figure 4.2 Dynamics of the Eurotransplant heart + lung waiting list and heart + lung transplants and Eurotransplant lung waiting list and lung transplants between 1991 and 2005

800

700

600

500

400

300

200

100

0 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

Lung waiting list 90 141 203 227 224 204 216 224 350 377 430 462 517 592 674

Heart+Lung waiting list 48 48 49 71 79 71 66 60 46 42 43 43 45 54 64

Heart+Lung transplants 24 32 28 43 42 34 43 20 28 20 21 24 23 18 21

Lung transplants 71 109 119 138 125 154 155 228 239 258 272 358 382 419 451

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5. Liver and intestine: donation, waiting lists, and transplants

Table 5.1 Deceased donor livers in the Eurotransplant region in: 2005

Donors

donor country Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total deceased donors 210 262 1255 3 264 22 2016 233 2249 not liver donors 32 14 152 1 106 2 307 187 494 deceased liver donors 178 248 1103 2 158 20 1709 46 1755 liver donors not used 39 45 290 0 43 5 422 31 453 one split used 0200103 0 3 both splits used 61230010058 1 59 whole liver used 133 189 783 2 104 15 1226 14 1240 total liver donors used 139 203 813 2 115 15 1287 15 1302

Donor procedures

donor country Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total whole liver procedure 172 233 1068 2 147 20 1642 44 1686 split liver procedure 61534011066268 total 178 248 1102 2 158 20 1708 46 1754

Whole livers

donor country Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total reported 172 233 1068 2 147 20 1642 44 1686 Lnot procured 34 30 186 0 35 4 289 27 316 procured 138 203 882 2 112 16 1353 17 1370 not transplanted 514990 8 1127 3 130 transplanted 133 189 783 2 104 15 1226 14 1240

Figure 5.1 Dynamics of the Eurotransplant liver waiting list and liver transplants between 1991 and 2005

2500

2000

1500

1000

500

0 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

Liver waiting list 229 253 203 212 263 327 374 492 593 803 1093 1366 1714 2035 2134

Living donor transplants* 5 15 14 24 25 22 41 38 64 116 124 129 133 106 121

Cadaveric donor transplants 710 765 878 892 944 1032 1097 1071 1132 1168 1112 1136 1264 1262 1364

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Split livers

donor country Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total available split livers 12 30 68 0 22 0 132 4 136 split liver not used 04801013 2 15 split liver transplanted 12 26 60 0 21 0 119 2 121

Table 5.2 Active liver transplant waiting list as per December 31, 2005 - characteristics

type of transplant Austria Belgium Germany Netherlands Slovenia total % liver 87 237 1572 161 9 2066 96.8% liver + kidney 3 9 47 1 0 60 2.8% liver + kidney + pancreas 0 1 0 0 0 1 0.0% liver + lung 0 0 2 1 0 3 0.1% liver + pancreas 0 2 2 0 0 4 0.2% total 90 249 1623 163 9 2134 100.0%

Table 5.3 Active liver only transplant waiting list as per December 31 - characteristics

blood group sequence waiting time (months) not year A AB B O first repeat 0-5 6-11 12-23 24 + reported 2005 865 52 273 876 1955 111 711 382 542 431 0 % 41.9% 2.5% 13.2% 42.4% 94.6% 5.4% 34.4% 18.5% 26.2% 20.9% 0.0% 2004 870 57 242 790 1847 112 739 466 531 223 0 % 44.4% 2.9% 12.4% 40.3% 94.3% 5.7% 37.7% 23.8% 27.1% 11.4% 0.0% 2003 719 60 233 632 1555 89 728 532 313 71 0 % 43.7% 3.6% 14.2% 38.4% 94.6% 5.4% 44.3% 32.4% 19.0% 4.3% 0.0% 2002 566 38 194 498 1219 77 717 367 179 25 8 % 43.7% 2.9% 15.0% 38.4% 94.1% 5.9% 55.3% 28.3% 13.8% 1.9% 0.6% 2001 461 36 171 374 986 56 613 321 97 9 2 % 44.2% 3.5% 16.4% 35.9% 94.6% 5.4% 58.8% 30.8% 9.3% 0.9% 0.2% 2000 322 30 122 291 728 37 545 163 43 12 2 % 42.1% 3.9% 15.9% 38.0% 95.2% 4.8% 71.2% 21.3% 5.6% 1.6% 0.3%

Table 5.4 Liver transplants 2005 - characteristics

Deceased donor liver transplants

Type of transplant Austria Belgium Germany Netherlands Slovenia non ET total % split liver 6 24 83 6 0 0 119 8.7% whole liver 118 182 776 103 13 4 1196 87.7% kidney + split liver 0 1 1 0 0 0 2 0.1% kidney + whole liver 7 5 26 3 0 0 41 3.0% kidney en bloc + whole liver 0 1 0 0 0 0 1 0.1% both lungs + whole liver 0 1 0 0 0 0 1 0.1% pancreas + whole liver 2 0 0 0 0 0 2 0.1% heart + whole liver 0 0 1 0 0 0 1 0.1% kidney + pancreas + whole liver 0 0 1 0 0 0 1 0.1% total 133 214 888 112 13 4 1364 100.0%

Liver only (deceased donor) transplant

blood group Austria Belgium Germany Netherlands Slovenia non ET total % A 61 88 380 41 8 1 579 44.0% AB 4 11 85 12 0 2 114 8.7% B 19 31 104 14 1 1 170 12.9% O 40 76 290 42 4 0 452 34.4% total 124 206 859 109 13 4 1315 100.0%

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waiting time (months) Austria Belgium Germany Netherlands Slovenia non ET total % 0-5 70 125 510 40 10 4 759 57.7% 6-11 34 24 131 21 2 0 212 16.1% 12-23 16 45 125 38 1 0 225 17.1% 24-59 4 12 91 10 0 0 117 8.9% 60 + 0 0 2 0 0 0 2 0.2% total 124 206 859 109 13 4 1315 100.0%

sequence Austria Belgium Germany Netherlands Slovenia non ET total % first 117 179 720 95 12 4 1127 85.7% repeat 7 27 139 14 1 0 188 14.3% total 124 206 859 109 13 4 1315 100.0%

Table 5.5 Living donor liver transplants - liver only 2005

Liver only Austria Belgium Germany Netherlands total % domino 0 3 10 2 15 12.4% non related 0 1 13 1 15 12.4% related 3 23 65 0 91 75.2% total 3 27 88 3 121 100.0%

related Austria Belgium Germany total % brother / sister 0 2 12 14 15.4% father 1 6 16 23 25.3% mother 1 7 11 19 20.9% son / daughter 0 7 23 30 33.0% grand father / mother 1 1 0 2 2.2% nephew / niece 0 0 2 2 2.2% blood related : NOS * 0 0 1 1 1.1% total 3 23 65 91 100.0% P non related Belgium Germany Netherlands total % spouse 0 11 0 11 73.33% other 1 2 1 4 26.67% total 1 13 1 15 100.00%

* Not otherwise specified

Intestine transplants in 2005

On January 1, 2005, 15 patients were on the waiting list for an intestinal transplant. (9 in Germany, 3 in Belgium, 3 in Austria). During the year 2005, 10 patients were registered for either an intestinal transplant (N=4) or for a combined intestinal transplant (N=6). As per December 31, 2005, 13* patients were awaiting either an isolated intestinal transplant (N=7) or in combination with another organ (N=6).

In 2005, 7 intestinal transplants were performed. (BC:2; IB:3; LG:1 and 1 in Switzerland). Four transplants were isolated intestine transplants and 3 were combined intestine transplants. In 2004, 3 isolated intestine transplants were performed as well as 4 combined intestine transplants. All of these were obtained through sharing, thus not from local donors. Two patients died while awaiting a transplant. Three patients were removed from the waiting list.

* Urgency patients on the waiting list as per 31-12-2005 Intestine only: all 7 patients on NT (1 patient NT due to capacity problems in 1 center). Combined: 4 patients on T, 2 patients on NT (2 patients NT due to capacity problems in 1 center).

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6. Pancreas and islets: donation, waiting lists, and transplants

Table 6.1 Deceased donors /pancreas in Eurotransplant in 2005

Donors

Deceased donors Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total all donors 210 262 1255 3 264 22 2016 233 2249 not pancreas donors 134 113 664 1 171 7 1090 223 1313 pancreas donors 76 149 591 2 93 15 926 10 936 pancreas donors not used 45 100 406 2 62 9 624 10 634 pancreatic islet donors used 3163308060 0 60 whole pancreas donors used 28 33 152 0 23 6 242 0 242 total pancreas donors used 31 49 185 0 31 6 302 0 302

Pancreas

Donor country Austria Belgium Germany Luxembourg Netherlands Slovenia total ET non ET total pancreas reported 76 149 589 2 92 15 923 10 933 pancreas not procured 37 58 289 1 31 7 423 10 433 pancreas procured 39 91 300 1 61 8 500 0 500 pancreas not transplanted 8 42 115 1 30 2 198 0 198 pancreas transplanted 31 49 185 0 31 6 302 0 302

Table 6.2 Active pancreas transplant waiting list as per December 31, 2005 - characteristics

type of transplant Austria Belgium Germany Netherlands total % Ppancreas 14 13 19 13 59 21.0% kidney+pancreas 24 18 148 27 217 77.2% liver+pancreas 0 2 2 0 4 1.4% kidney+liver+pancreas 0 1 0 0 1 0.4% total 38 34 169 40 281 100.0%

Table 6.3a Active pancreas only transplant waiting list as per December 31 - characteristics

blood group sequence waiting time (months) year A AB B O first repeat 0-5 6-11 12-23 24 +

2005 27 2 8 22 30 29 16 17 13 13 % 45.8 % 3.4% 13.6% 37.3% 50.8% 49.2% 27.1% 28.8% 22.0% 22.0% 2004 34 0 3 37 45 29 25 10 13 26 % 45.9% 0.0% 4.1% 50.0% 60.8% 39.2% 33.8% 13.5% 17.6% 35.1% 2003 30 1 4 40 49 26 19 18 18 20 % 40.0% 1.3% 5.3% 53.3% 65.3% 34.7% 25.3% 24.0% 24.0% 26.7% 2002 26 1 3 34 46 18 32 9 9 14 % 40.6% 1.6% 4.7% 53.1% 71.9% 28.1% 50.0% 14.1% 14.1% 21.9% 2001 26 1 6 37 41 29 20 7 15 28 % 37.1% 1.4% 8.6% 2.9% 58.6% 41.4% 28.6% 10.0% 21.4% 40.0% 2000 34 1 9 43 48 39 17 13 20 37 % 39.1% 1.1% 10.3% 49.4% 55.2% 44.8% 19.5% 14.9% 23.0% 42.5%

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Table 6.3b Active kidney+pancreas transplant waiting list as per December 31 - characteristics

blood group sequence waiting time (months) year A AB B O first repeat 0-5 6-11 12-23 24 +

2005 91 2 35 89 200 17 85 84 32 16 % 41.9% 0.9% 16.1% 41.0% 92.2%7.8% 39.2% 38.7% 14.7% 7.4% 2004 67 1 36 99 193 10 105 57 26 15 % 33.0% 0.5% 17.7% 48.8% 95.1% 4.9% 51.7% 28.1% 12.8% 7.4% 2003 56 4 22 94 166 10 77 50 45 4 % 31.8% 2.3% 12.5% 53.4% 94.3% 5.7% 43.8% 28.4% 25.6% 2.3% 2002 82 3 17 117 208 11 96 86 29 8 % 37.4% 1.4% 7.8%53.4% 95.0% 5.0% 43.8% 39.3% 13.2% 3.7% 2001 43 7 12 82 137 7 77 36 28 3 % 29.9% 4.9% 8.3% 56.9% 95.1% 4.9% 53.5% 25.0% 19.4% 2.1% 2000 65 3 15 112 183 12 81 76 34 4 % 33.3% 1.5% 7.7% 57.4% 93.8% 6.2% 41.5% 39.0% 17.4% 2.1%

Table 6.4a Pancreas transplants 2005 - characteristics

Deceased donor pancreas transplants

type of transplant Austria Belgium Germany Netherlands total % pancreas 5 4 21 1 31 11.8% islets 1 14 2 0 17 6.5% kidney + pancreas 26 20 143 20 209 79.8% kidney + islets 0 0 2 0 2 0.8% pancreas + liver 2 0 0 0 2 0.8% kidney + liver + pancreas 0 0 1 0 1 0.4% total 34 38 169 21 262 100.0%

Pancreas only (deceased donor) transplant (whole )

blood group Austria Belgium Germany Netherlands total % A 1 2 9 0 12 38.7% AB 0 0 1 0 1 3.2% B 0 0 1 0 1 3.2% O 4 2 10 1 17 54.8% total 5 4 21 1 31 100.0%

waiting time (months) Austria Belgium Germany Netherlands total % 0-5 1 2 3 0 6 19.4% 6-11 1 0 9 0 10 32.3% 12-23 1 1 8 0 10 32.3% 24-59 2 1 1 1 5 16.1% total 5 4 21 1 31 100.0%

sequence Austria Belgium Germany Netherlands total % first 4 3 3 0 10 32.3% repeat 1 1 18 1 21 67.7% total 5 4 21 1 31 100.0%

Table 6.4b Number of pancreas islet transplantations 2005

AIBTP BBCTP GGITP total recipients transplanted 17412 number of transplants 114419 number of donors used 153761

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Table 6.4c Pancreas transplants 2005 - characteristics

Whole pancreas + Kidney (deceased donor) transplant

blood group Austria Belgium Germany Netherlands total % A 10 6 63 7 86 41.1% AB 1 1 7 1 10 4.8% B 4 4 20 2 30 14.4% O 11 9 53 10 83 39.7% total 26 20 143 20 209 100.0%

waiting time (months) Austria Belgium Germany Netherlands total % 0-5 18 9 22 1 50 23.9% 6-11 7 3 69 5 84 40.2% 12-23 0 4 42 13 59 28.2% 24-59 1 4 8 1 14 6.7% 60 + 0 0 2 0 2 1.0% total 26 20 143 20 209 100.0%

sequence Austria Belgium Germany Netherlands total % first 26 19 137 20 202 96.7% repeat 0 1 6 0 7 3.3% total 26 20 143 20 209 100.0%

Figure 6.1 Dynamics of the Eurotransplant pancreas+kidney and islet+kidney waiting list, pancreas+kidney, islet+kidney, pancreas and islet-only transplants between 1991 and 2005

350

300

250

200

150

100

0 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

Islet+Kidney & Pancreas+Kidney waiting list 120 141 112 98 85 110 127 155 193 195 144 219 176 203 217

Pancreas+Kidney transplants 70 62 92 87 98 131 189 230 282 302 264 208 247 229 209

Islets+Kidney transplant 0 0 0 1 5 9 13 4 4 4 5 4 3 4 2

Pancreas transplants 4 4 2 3 1 8 15 17 13 16 19 39 35 34 31

Islet transplants 0 1 6 5 15 6 9 7 2 9 18 46 33 23 17

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7. Histocompatibility Testing

I.I.N. Doxiadis, PhD and F.H.J. Claas, PhD, Eurotransplant Reference Laboratory, Department of Immunohaema- tology and Blood Transfusion, Leiden University Medical Center, Leiden, The Netherlands

7.1 Introduction

An ongoing task of the Eurotransplant Reference Laboratory (ETRL) is the improvement and maintenance of the high quality of HLA typing, screening for transplantation relevant antibodies and crossmatching within Eurotransplant (ET) and its affiliated centers. This task is addressed by organising Proficiency Testing Schemes (External Proficiency Testing Exercises) for the collaborating Tissue Typing Centers (TTC). Furthermore, the ETRL initiates studies and promotes discussions for possible new recommendations with the help of the Tissue Typing Advisory Committee (TTAC). In addition, in the past 20 years the ETRL has addressed the problem of highly sensitised patients, by organising and promoting the Acceptable Mismatch (AM) program. Furthermore, visits to the affiliated TTC belong to its duties. The ETRL provides 24 hours a day, 7 days a week duty for all transplantation relevant immunological aspects for all patients within ET.

7.2 Eurotransplant External Proficiency Testing Schemes

The EPT Schemes applied in 2005 to determine the individual performance of the TTC’s are reported below:

7.2.1 External Proficiency Testing on HLA typing

In 2005, each participating laboratory received eight blood samples for typing and was asked to report the results before a certain deadline. For the analysis of the results the typing performed by the ETRL was taken as correct, as proposed by the External Proficiency Testing Committee of the European Federation for Immunogenetics H(www.efiweb.org). The results based on the report of the split HLA specificities are summarised in the Table 1 below

Table 7.1: External Proficiency Testing Exercises on HLA typing (N=56 participants)

Locus Typings reported (N) Discordant results (N) HLA-A 370 4 HLA-B 370 1 HLA-C 245 1 HLA-DR (B1) 366 2 HLA DR B345 290 0 HLA-DQ (B1) 299 1

* Including the use of erroneous nomenclature

Since the TTC use serological and molecular methods for HLA typing no differentiation with respect to the method was done.

7.2.2 External Proficiency Testing Exercises on molecular typing

For the EPT on molecular typing two sets of 5 DNA samples each (DNA#24 and DNA#25) were sent to the participants. The DNA was isolated from spleen cells of organ donors, peripheral blood cells from healthy blood donors or cell lines. Rare alleles or haplotypes were included. The participants reported typing results on the two-digit resolution level for MHC class I and class II. In the table 2 the total number of typings reported and the number and type of discrepancies is showed:

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Table 7.2: Report of molecular typing results

MHC Locus Typings Discrepancies NN% Class I HLA-A 534 4 0.8 HLA-B 534 5 0.9 Class II HLA-DRB1 534 4 0.8 HLA-DQB1 489 3 0.6

The number of discrepancies for HLA-A, B is higher than in the past year. The main cause of discrepancies is clerical errors. Nomenclature problems are still present but to a lesser extent than in the past presumably due to the EFI Accreditation and Certification procedure.

7.2.3 External Proficiency Testing on Crossmatching

As in the past, TTC participating in this External Proficiency Testing Exercise were asked to perform crossmatches using the cells provided for the Proficiency Testing Exercise on serological typing and the sera of four different Eurotransplant patients selected by the ETRL. The TTC used the local crossmatch techniques using dithiothreitol to destroy IgM specific antibodies to simulate the day-to-day practice (table 3). In total 32 sera had to be cross- matched per TTC. For the centers not receiving the sera of the patients on the waiting list, as Scandia Transplant, the German centers performing patient histocompatibility work only, and centers from other organ exchange orga- nisations, eight sera were selected and sent to the participants. These TTC could report 64 crossmatches in total.

Table 7.3: Report of the crossmatch results

+DTT discrepant -DTT discrepant % Total N % Total N

Centers having access to ET patient sera (N=31) 786 55 7 740 37 5 Centers not having access to ET patient sera (N=25) 1100 33 3 1100 25 2.5

DTT = dithiothreitol

7.2.4 External Proficiency Testing Exercise on Screening

In 2005 the scheme of the EPT Exercise on screening was changed from a send out of 4 serum samples from multiparous women 4 times per year to 2 times 6 sera per year. The HLA typing of the serum donor, the immunising partner and of one of the children is known in almost all instances, but not reported to the participants before hand. The ETRL received results from 68 participants. Almost all participants performed CDC as their routine screening procedure, with addition or not of dithiothreitol. However, other solid phase techniques as ELISA or Luminex start to show up. Most participants report results of solid phase assays for the existence or not of Class I or II specific antibodies. The % PRA value as obtained by CDC remains unreliable. The report of HLA specific antibodies in this period is continuously evolving and is significantly better than in previous years (table 4).

Table 7.4: External Proficiency Testing on screening for HLA specific antibodies (68 participants)

Reports Discrepant NN %

Existence of MHC class I antibodies 466 13 2.8 Existence of MHC Class II antibodies 411 19 4.6 Report of HLA specificities 682 14 2.1

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7.3 Programmes for the highly sensitised patients in Eurotransplant

In 2005, the Acceptable Mismatch Programme (AM) program organised and controlled by the ETRL has been an efficient tool to a number of highly sensitized patients. This program is open for all patients of Eurotransplant. Information for participation can be obtained directly from the ETRL, the Eurotransplant Administration, or from the site of the ETRL. With this program 45 patients received a crossmatch negative offer and have been transplanted in 2005. The summary of the number of patients transplanted and still on the waiting list is given in figures 1 and 2.

Figure 1: Number of transplantation of AM patients Figure 2: Number of patients in the AM program in December of the respective year

N 50 N 180

45 160

40 140

35 120 30 100 25 80 20 60 15

10 40

5 20

0 0 A B G NL SLO T A B G L NL SLO OTH TOT

2003 2004 2005 2003 2004 2005

7.4 Other activities P The ETRL site The site of the ETRL (www.etrl.org) is open for all laboratories working in the field of transplantation immunology and histocompatibility. Besides important information on the duties of the ETRL the participants of the EPT can download the respective forms for the report of the results as well as the final analysis. Further information of future meetings within ET as well as reports of these meetings is found there.

Annual Tissue Typers Meeting The Annual Tissue Typers Meeting was held in October 2005 in Noordwijk. A report of that meeting can be downloaded from the ETRL site www.etrl.org. Over a hundred participants from the different TTC were present. The major topic was the relevance of HLA specific and other antibodies in kidney transplantation.

Tissue Typing Advisory Committee (TTAC) The minutes of the meetings of the TTAC and the accepted recommendations have been published in the ET Newsletter. Throughout 2005 the TTAC discussed the problems related to the situation in Germany. However, new guidelines in Germany were released which will help to solve the problems.

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8. Publications in 2005

The names of authors who work at the Eurotransplant central office or Eurotransplant Reference Laboratory are in Italic.

Articles

Sotiropoulos GC, Paul A, Molmenti E, Lang H, Frilling A, Napieralski BP, Nadalin S, Treckmann J, Brokalaki EI, Gerling T, Broelsch CE, Malagó MLiver transplantation for hepatocellular carcinoma in cirrhosis within the Eurotransplant area: an additional option with ‘livers that nobody wants’ Transplantation, vol. 80, nr. 7, Oct. 2005

Gerling T, Persijn GG The Eurotransplant liver allocation system In: Busuttil RW, Klintmalm GB [Eds] p87-91, Transplantation of the liver (2005)

Smit H, Gerling T, Boer de J Dringlichkeit, Erfolgsaussicht, Chancengleichheit In: Intensivmed. 2005; 42: 489-495

Doxiadis IIN, Duquesnoy RJ, Claas FHJ Extending options for highly sensitized patients to receive a suitable kidney graft In: Curr Opin Immunol. 2005 Oct;17(5):536-40

Andresdottir MB, Haasnoot GW, Doxiadis IIN Exclusive characteristics of graft survival and risk factors in recipients with immunoglobulin A nephropathy: A retrospective analysis of registry data Transplantation 80 (8): p1012-1018, Oct. 27, 2005

Smits JMA, Vanhaecke J, Haverich A, Vries de E, Roels L, Persijn GG, Laufer G PWaiting for a thoracic transplant in Eurotransplant Transplant Int. 19; p 54-66, October 2005

Doxiadis IIN, Haasnoot GW, Persijn GG, Claas FHJ The disadvantage of being an HLA-homozygous kidney patient: longer waiting time, more mismatches, and poorer graft survival Hum. Immunol. 66: 14, suppl. 1 2005 [abstract]

Doxiadis IIN, Fijter de J, Haasnoot G Identification of parameters that contribute to a successful kidney retransplantation Hum. Immunol. 66: p14, suppl. 1 2005 [abstract]

Spyropoulou-Vlachou M, Doxiadis IIN, Vrani V, et al. The effect of HLA-class II genetic polymorphism on susceptibility to Type I diabetes in Greeks Hum. Immunol. 66: p67, suppl. 1 2005 [abstract]

Doxiadis IIN, Witvliet M, Duquesnoy R The alternative to desensitization of highly sensitized kidney patients is the acceptable mismatch program: Short waiting time, reduced costs, and excellent graft outcome Hum. Immunol. 66: p116, suppl. 1 2005 [abstract]

Gerling T Eurotransplant (Teil 1) KfH Aspekte 2005; 3: 12-13

Gerling T Eurotransplant (Teil 2) KfH Aspekte 2005; 4: 12-13

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Articles / abstracts in press:

Cecka JM, Cohen B, Rosendale J, Smith M More efficient use of kidneys recovered from older deceased donor could result in more kidney transplants for older patients In: Transplantation

Articles / abstracts submitted:

Doxiadis IIN, Haasnoot GW, Persijn GG, Claas FHJ The disadvantage of being an HLA-homozygous kidney patient: longer waiting time, more mismatches, and poorer graft survival To: Transplantation

Mertens A, Smits JMA On a comparison of empirical pseudo-likelihood based Bayesian meta-analyses with fully Bayesian analyses of the Eurotransplant heart transplant data To: Statistical Modelling

Treichel U, Voelp A, Gerling T, Persijn GG Predictors of mortality and treatment modalities for patients on the Eurotransplant waiting list for liver transplantation [abstract] To:

Frei U, Noeldeke J, Fabrizii V, Arbogast H, Margreiter R, Fricke L, Voiculescu A, Kliem V, Ebel H, Albert U, Lopau K, Schnülle P, Offermann R, Persijn GG, Bernasconi C Prospective age matching in elderly kidney transplant recipients – a 5 years analysis of the Eurotransplant Senior Program To: NEJM

INVITED LECTURES

1. Meeting of the Deutsche Transplantations Gesellschaft (DTG) September 23 – 24, 2005, Rostock, Germany

Transplantation in the new Europe: potential and expectations of the Baltic area – the Eurotransplant concept of cooperation Rahmel A

2. Annual Eurotransplant meeting October 6 7, 2005, Noordwijk the Netherlands

The medical Directors report Persijn GG

Kidney users meeting: ETKAS update 1996 - 2005 Persijn GG

3. Congress of the European Society for Organ Transplantation Congress of the European Transplant Coordinators Organization October 13 – 17, 2005, Geneva, Switzerland

Old donor organs: results from heart, lung, liver and kidney transplants in Eurotransplant Smits JMA

The disadvantage of HLA homozygous kidney patients within Eurotransplant Persijn GG

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4. KfH Symposium November 5, 2005, Cologne, Germany

Vergabekriterien bei der Nierentransplantation Persijn GG

5. Vortragsveranstaltung Göttingen ‘Organe spenden Leben’ November 9, 2005, Göttingen, Germany

Organspende im Alter und geteilte Organe – organisatorische Auswege aus dem Mangel Rahmel A

6. Informatiedag levertransplantatie (Nederlandse Leverpatiënten Vereniging) November 12, 2005, Groningen, the Netherlands

De leverwachtlijst in Eurotransplant Gerling T

7. ESOT – ECOT Hesperis course November 16, 2005, Vienna, Austria

Organ donation and allocation in Europe Persijn GG

8. Herz, Lungen und Herz+Lungen Transplantierten Verein November 16, 2005, Vienna, Austria

Eurotransplant anno 2005 Persijn GG

9. Arbeitsgruppe thorakale Organtransplantation der DTG November 25, 2005, Berlin, Germany

Aktuelle Richtlinien für die thorakale Organallokation Rahmel A

10. 1500th Nierentransplantation Kongress November 26, 2005, Hann. Münden, Germany

Eurotransplant: gestern und heute Persijn GG

11. Asian Society for Organ Transplantation November 30 – December 4, 2005, Karachi, Pakistan

Panelist in Histocompatibility Workshop with Opelz G and Cecka M Persijn GG

The Eurotransplant Acceptable Mismatch Program for highly sensitized kidney patients Persijn GG

Chairman of the session: post-transplant malignancies Persijn GG

Different aspects of living donor transplantation in Eurotransplant Persijn GG

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9. Annual Social Report Figures

Intake Number of new Total number of Intake employees employees (31-12) percentage Regular 10 66 15% Student 8 23 35% Total 18 89 20%

Outflow Exit number Total number of Outflow percentage employees (1-1) Regular 7 63 11% Student 12 27 44% Total 19 90 21%

Number of employees at the end of year Numbers FTE Student 23 8,4 Part-timer 24 17,0 Full timer 28 28 Full timer + (> 36 hours per week) 14 14,3 Total 89 67,7

Division Male/Female Male Male % Female Female% Regular 35 53% 31 47% Student 14 60% 9 40% Total 49 55% 40 45%

AAbsentee rates 2005 incl. insured 2005 excl. Average absentee Average absentee A absenteeism* absenteeism* frequencies duration Regular 5,6% 4,1% 2,2 10,9 days Student 0,3% 0,3% 0,3 2,8 days

* Insured absenteeism is people who have been on sickness benefit. This is when disability is caused by pregnancy or maternity leave, organ donation or with regard to a former recipient of disablement insurance benefits.

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10. Abbreviated Financial Statements Abbreviated financial statements of Stichting Eurotransplant International Foundation, derived from the audited financial statements of Stichting Eurotransplant International Foundation for the year ended December 31, 2005.

For an understanding of the Foundation’s financial position and results and for an adequate understanding of the scope of our audit, the abbreviated financial statements should be read in conjunction with the financial statements from which the abbreviated financial statements have been derived and our unqualified auditors’ report thereon issued on April 13, 2006.

Balance sheet Assets 31.12.2005 31.12.2004 x € 1000 x € 1000

Fixed assets 2.796 2.533 Short term receivables 1.510 1.479 Liquid assets 761 1.393

5.067 5.405

Liabilities 31.12.2005 31.12.2004 x € 1000 x € 1000

Equity 235 235 Reserve funds 2.959 2.980 Provisions 167 367 Short term liabilities 1.706 1.823 A 5.067 5.405

Statement of income and charges Income 2005 2004 x € 1000 x € 1000

Registration fees 4.285 4.354 Procurement fees 1.871 2.613 Miscellaneous 81 67 Extra-ordinary income 48 823

6.285 7.857

Charges 2005 2004 x € 1000 x € 1000

Salaries 2.996 2.769 Procurement charges 1.920 2.612 General expenses 554 702 Medical expenses 64 63 Transport 32 42 Housing 197 195 Depreciation 227 313 Miscellaneous 316 331 Extra-ordinary expenses 0 823

6.306 7.851

Exploitation balance -21 6 63082 bw NW3 29-06-2006 13:22 Pagina 54

Appropriation of Results Release Reserve Fund explantation costs -48 2 Release Reserve Fund Reorganization -385 0 Addition Reserve Fund Reorganizational Backlog 433 0 Addition Tariff Equality Reserve -21 4

-21 6 Accounting policies General The accounts are prepared under the historical cost convention. Unless stated otherwise, assets and liabilities are stated at face value. Amounts in foreign currencies have been converted in Euro at the rate of the balance date. Income and expenses are accounted for on an accrual basis. Profit is only included when realized. Losses and risks originating from before the end of the financial year are taken into account if they have become known before preparation of the financial statements. Principles of valuation of assets and liabilities Fixed assets Fixed assets are stated at bookvalue. For intangible assets amortization is charged as a percentage of cost. For tangible fixed assets the depreciation is based on the estimated useful life and calculated as a percentage of cost, taking into account any residual value. The financial fixed assets are stated at redemption value.

Accounts Receivable Receivables are included at face value, less any provision for doubtful accounts.

Reserve Funds Reserve funds are formed for future expenditures which should be covered out of the current available assets.

Provisions For obligations and losses, which can be reasonably estimated and which originate from the current book year, provisions are being formed. Principles for the determination of the Result Registration fees Registration fees are taken into account as of the date of entry on the waiting list of Eurotransplant.

Charges The general expenses of the Stichting Eurotransplant International Foundation are stated on the basis of transaction costs.

Certain general expenses of the Nederlandse Transplantatie Stichting and Stichting Eurotransplant International Foundation are made for common account. Such costs are divided between the two foundations on the basis of activity-levels.

Exploitation balance The exploitation balance is defined as the difference between income and related charges, based on the above mentioned principles. Auditors’ Report We have audited the abbreviated financial statements of Stichting Eurotransplant International Foundation, Leiden, for the year 2005. These abbreviated financial statements have been derived from the financial statements of Stichting Eurotransplant International Foundation for the year 2005. In our auditors’ report dated April 13, 2006 we expressed an unqualified opinion on these financial statements. These abbreviated financial statements are the responsibility of the Foundation’s management. Our responsibility is to express an opinion on these abbreviated financial statements. In our opinion, these abbreviated financial statements are consistent, in all material respects, with the financial statements from which they have been derived. For a better understanding of the Foundation’s financial position and results and of the scope of our audit, the abbreviated financial statements should be read in conjunction with the finacial statements from which the abbreviated financial statements have been derived and our auditors’ report thereon issued on April 13, 2006.

Leiden, May 19, 2006 Deloitte Accountants B.V.

Drs. G.J.W. Coppus RA 63082 om 2005 29-06-2006 13:40 Pagina 1

EUROTRANSPLANT INTERNATIONAL FOUND EUROTRANSPLANT INTERNATIONAL FOUNDATION Annual Report 2005 ATION Annual Report 2005