1. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 THE REGISTRY OF THE INTERNATIONAL SOCIETY FOR HEART AND LUNG TRANSPLANTATION: TWENTIETH ANNUAL REPORT

2. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Major Contributors to the ISHLT Transplant Registry Australia and New Zealand Cardiothoracic Organ Transplant Registry (ANZCOTR): Australia New Zealand Eurotransplant (ET): AustriaGermanySlovenia BelgiumNetherlands Scandiatransplant: DenmarkNorway FinlandSweden United Kingdom Transplant Services Authority (UKTSSA): United KingdomIreland United Network for Organ Sharing (UNOS): United States 70 individual centers from Canada, Central/South America, Europe and Asia reporting transplants since 1995

3. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 ACKNOWLEDGMENTS: We wish to extend our sincere thanks to the many thoracic transplant surgeons, physicians and data coordinators in transplant programs throughout the world whose timely and accurate submission of data has made these analyses possible.

4. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 ISHLT International Heart and Lung Transplant Registry Mission Statement The ISHLT International Heart and Lung Transplant Registry was created to advance the state of knowledge and patient care regarding therapies for the failing heart and lung. This mission is accomplished by maintaining a repository of the worldwide thoracic organ transplant experience and by fostering related outcomes research in order to: 1.Create new knowledge related to advanced heart and lung failure and transplantation; 2.Serve as a resource for healthcare providers seeking information regarding patient care;

5. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 ISHLT International Heart and Lung Transplant Registry Mission Statement 3. Provide benchmark aggregate date for use by individual centers to assess their center-specific practices and outcomes; 4. Serve as a resource for governmental agencies worldwide when formulating public policy regarding thoracic organ transplantation; 5. Serve as a resource for patient-related organizations and pharmaceutical companies regarding disease-specific therapies and transplant outcomes (contd)

6. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Goals of Registry 1.Increase the number of studies using Registry data 2.Increase the number of non-US reporting centers 3.Develop sources of external funding 4.Optimize the value and image of the Registry to the Society, its members, and the external research community 5.Identify patient-related organizations and pharmaceutical companies and make them aware of the Registry as a resource 6.Restructure the data fields into a tiered system and increase the number of required fields 7.Increase the number of reporting agreements with non- US government regulatory agencies

7. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 REGISTRY STEERING COMMITTEE Marshall Hertz – Medical Director Elbert Trulock – Associate Dir. for Lung Transpl. David O. Taylor – Associate Dir. for Heart Transpl. Mark Boucek – Associate Dir. for Pediatric Transpl. Mario Deng – MCSD Database Medical Director Amanda Rowe – ISHLT Executive Director Berkeley Keck – Assoc. Dir. for Database Management Leah Edwards – Associate Dir. for Data Analysis

8. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 General Registry Statistics

9. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 REGISTRY DATABASE: Number of Transplants Reported ORGANTransplants Reported Through 6/30/2003 Heart66,353 Heart-Lung3,049 Lung17,128

10. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 REGISTRY DATABASE: Number of Centers Reporting Transplants Organ Centers Ever Reporting Data Centers Reporting Transplants in 1994 Centers Reporting Transplants between 1/2002 and 6/2003 Heart333252200 Heart-Lung1326344 Lung201119111

11. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 REGISTRY DATABASE: Number of Centers Reporting Heart Transplants

12. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 REGISTRY DATABASE: Number of Centers Reporting Lung Transplants

13. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 REGISTRY DATABASE: Number of Centers Reporting Heart-Lung Transplants

14. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 APPENDIX

15. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT ARGENTINA Fundacion Favaloroxx AUSTRALIA St. Vincentxx The Prince Charles Hospitalxx Royal Childrens Hospitalxx The Alfred Hospitalxx Royal Perth Hospitalxx AUSTRIA University of Viennaxx Innsbruck University Hospitalxx University Klinik fur Chirurgie (Graz)xx BELGIUM Erasme Univ. Hospital (Brussels)xx (Contd)

16. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT BELGIUM (contd) Univ. Hospital Gasthuisberg (Leuven) xx University Hospital Antwerp xx University Hospital Gent xx Centre Hospitalier Universitaire de Liege, CHU Sart-Tilman xx CANADA Royal Victoria Hospital xx Montreal Heart Institute xx The Toronto General Hospital xx Hospital Notre-Dame xx Quebec Heart Institute - Laval Hospital xx Ottawa Heart Institute x Univ. of Alberta Hospitals/ Walter C. Mackenzie Health Sciences xx (Contd)

17. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT CANADA (contd) St. Paulxx Vancouver General Hospitalxx The Hospital for Sick Childrenxx CHILE Hospital DIPRECAxx Clinica Las Condesxx DENMARK Skejby University Hospitalxx Rigshospitalet, National University Hospital xx FINLAND Helsinki University Central Hospitalxx Children's Hospital, Univ. of Helsinkixx (Contd)

18. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT FRANCE Hopital Cardiolgique (Lille) x Hopital La Pitie - Salpetriere x Hopices Civils Hopital Universitaires de Strasbourg x GERMANY Organisationsbuero des K.F.H. (Homburg/Saar) x Technischen Universitaet Dresden xx German Heart Institute (Berlin) xx Universitat Hamburg xx Universitaetsklinik (Koeln) xx University of Leipzig - Heart Center x Kerckoff-Klinik der Max-Planck- Gesellschaft zur Forderung der Wissenschaften e.V. (Bad Nauheim) x (Contd)

19. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT GERMANY (contd) Klinikum der Universitaet (Heidelberg) xx Herz-und Diabetesentrum Nordrhein -Westfalen (Bad Oeynhausen) xx Chirurgische Universitaetsklinik/ Univ. Rostock (Freiburg Im Breisgau) xx Essen University Medical School xx I. Med. Klinik J. Gutenberg (Mainz) xx der Heinrich-Heine-Universitat Dusseldorf xx Klinikum GroBhadern, Ludwig- Maximilians-Universitat Munchen xx Chirurgische Universitatsklinik Heidelberg xx (Contd)

20. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT GERMANY (contd) Medizinische Hochschule Hannover xx Universitatsklinik Gottingen xx Klinikum der Rheinisch- Westfalischen Technischen Hochschule Aachen xx Fulda Medical Center xx Klinikum der J. W. Goethe University (Frankfurt am Main) xx Klinikum Der Christian-Albrechts- Universtat zu Kiel xx Transplantations-Zentrum (Frankfurt) xx Friedrich Schiller Universitaet (Jena) xx (Contd)

21. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT GERMANY (contd) Medizinische Einrichtupgen der Universiteat, Nurenberg xx GREECE Onassis Cardiac Surgery Center xx IRELAND Mater Hospital xx ISRAEL Sheba Medical Center xx ITALY Policlinico S. Orsola - Universita degli Studi xx Ospedali Riuniti x (Contd)

22. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT JAPAN Tohoku University, IDAC Hospital x Osaka University Hospital xx National Cardiovascular Center xx NETHERLANDS Heart-Lung Institute, University Hospital Utrecht xx Thoraxcenter - University Hospital Rotterdam xx University Hospital Groningen xx NEW ZEALAND Green Lane Hospital xx NORWAY Rikshospitalet - National Hospital of Norway xx (Contd)

23. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT SLOVENIA University Medical Center Ljubljana xx SWEDEN University Hospital of Lund xx Sahlgrenska University Hospital xx SWITZERLAND Bern University Hospital x University Hospital Zurich x Univ Clinic for CardioThoracic Surgery Basel x UNITED KINGDOM Great Ormand Street Hospital for Children xx University of Glasgow/Glasgow Royal Infirmary xx Northern General Hospital xx (Contd)

24. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED KINGDOM (contd) The Freeman Hospital xx Harefield Hosp xx Wythenshawe Hospital xx Queen Elizabeth Hospital xx Papworth Hospital xx UNITED STATES University of Alabama Hospital xx Baptist Medical Center, Little Rock xx Arkansas Childrens Hospital xx The University Hospital of Arkansas xx University Medical Center, University of AZ xx (Contd)

25. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) Childrens Hospital Los Angeles xx Cedars Sinai Medical Center xx Loma Linda Univ. Medical Center xx California Pacific Medical Center xx UCSD Medical Center xx University of CA San Francisco Medical Center xx Sutter Memorial Hospital xx Sharp Memorial Hospital xx Stanford University Medical Center xx St Vincent Medical Center xx UCLA Medical Center xx (Contd)

26. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) USC University Hospital xx The Childrens Hospital, Denver xx University Hospital, Denver xx Hartford Hospital xx Yale New Haven Hospital xx Childrens National Medical Center x Washington Hospital Center xx All Childrens Hospital xx Jackson Memorial Hospital xx St Lukes Hospital, Jacksonville x Tampa General Hospital xx Tallahassee Memorial Hospital xx (Contd)

27. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) Shands Hospital at University of Florida xx Childrens Healthcare of Atlanta xx Emory University Hospital xx St. Joseph Hospital of Atlanta xx St. Francis Medical Center, Honolulu xx Univ. of Iowa Hospital and Clinics xx Childrens Memorial Hospital xx Loyola University Medical Center xx OSF St. Francis Medical Center xx St. Johns Hospital x (Contd)

28. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) Univ. of Chicago Medical Center xx University of Illinois Hospital xx Clarian Health-Methodist/IU/Riley xx Lutheran Hospital of Ft. Wayne xx St. Vincent Hosp. and Health Care Ctr xx Via Christi Regional Medical Center xx Jewish Hospital xx Kosair Childrens Hospital x Univ. of Kentucky Medical Center xx Ochsner Foundation Hospital xx Tulane University Medical Center xx Willis Knighton Medical Center xx (Contd)

29. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) Children's Hospital, Boston xx Massachusetts General Hospital xx New England Medical Center xx Brigham and Womens Hospital xx UMass Memorial Medical Center x Johns Hopkins Hospital xx Univ. of Maryland Medical System xx Childrens Hospital of Michigan xx Henry Ford Hospital xx Univ. of Michigan Medical Center xx Abbott Northwestern Hospital xx St. Marys Hospital (Mayo Clinic) xx Fairview University Medical Center xx (Contd)

30. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) Barnes-Jewish Hospital xx Cardinal Glennon Childrens Hospital xx St. Louis Childrens Hospital xx St. Lukes Hospital of Kansas City xx St. Louis University Hospital xx Univ. of Missouri Hospital and Clinic xx University of MS Medical Center xx NC Baptist Hospital xx Carolinas Medical Center xx Duke University Medical Center xx UNC Hospitals xx Bryan LGH Medical Center East xx Newark Beth Israel Medical Center xx (Contd)

31. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) Robert Wood Johnson Univ. Hosp xx Presbyterian Hospital, Albuquerque xx Albany Medical Center Hospital xx The Presbyterian Hospital in NY City xx Strong Memorial Hospital xx Montefiore Medical Center xx Mt. Sinai Medical Center xx New York University Medical Center x Westchester County Medical Center xx Cleveland Clinic Foundation xx Childrens Hospital Dayton x Children's Hospital Medical Center, Cincinnati xx Medical College Hospital, Toledo xx (Contd)

32. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) Ohio State University Hospital xx Univ. of Cincinnati Medical Center xx University Hospital of Cleveland xx Integris Baptist Medical Center xx St. Francis Hospital, Tulsa xx Providence Portland Medical Center xx Oregon Health Sciences Univ. Hosp xx Allegheny General Hospital xx Childrens Hospital of Pittsburgh xx Childrens Hospital of Philadelphia xx Penn State Milton S Hershey Med Ctr xx Hahnemann University Hospital Tenet xx Univ of Pittsburgh Medical Center xx (Contd)

33. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) Temple University Hospital xx The Hospital of the University of PA xx Cardiovascular Center of PR xx Medical University of SC xx Baptist Memorial Hosp, Memphis xx St. Thomas Hospital xx Vanderbilt University Medical Center xx Brooke Army Medical Center x University Hospital, San Antonio xx Childrens Medical Center of Dallas xx Seton Medical Center xx Columbia Hosp at Medical City Dallas xx St Lukes Episcopal Hospital xx (Contd)

34. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) Methodist Specialty & Transplant Hospital xx University of Texas Medical Branch xx The Methodist Hospital, Houston xx Christus Santa Rosa Medical Center xx St Paul University Hospital xx Texas Childrens Hospital Dallas x Baylor University Medical Center xx LDS Hospital xx University of Utah Medical Center xx Primary Childrens Medical Center xx Inova Fairfax Hospital xx Henrico Doctors Hospital xx MCV Hospitals xx (Contd)

35. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center TXs Performed in 2001 and Reported to ISHLT TXs Performed 1/2002-6/2003 and Reported to ISHLT UNITED STATES (contd) McGuire VA Medical Center xx Sentara Norfolk General Hospital xx University of Virginia HSC xx Childrens Hosp Medical Ctr, Seattle xx Sacred Heart Medical Center xx Univ. of Washington Medical Center xx Childrens Hospital of Wisconsin xx Froedtert Memorial Lutheran Hospital xx St Lukes Medical Center xx Univ. of Wisconsin Hosp. and Clinics xx (Contd)

36. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Data Currently Available on the ISHLT Web Site: http://www.ishlt.org 1.Quarterly reports of recent continent-specific statistics are available for general public: Transplant counts Tabulation of recipient, transplant and donor demographics Survival rates stratified by demographics 2.Quarterly reports for center-specific data are available for each center through the secure section of the ISHLT web site. If your center does not currently have access to the secure site, contact the Help Desk at help@ishlt.org to obtain an ID and password 3.Registry Report slides will be available for download from the ISHLT web site Summer 2004.

37. 2004 ISHLT J Heart Lung Transplant 2004; 23: 789-95 Requesting Data from the ISHLT Registry Data request form is available on the ISHLT web site: http://www.ishlt.org PROCESS FOR SUBMITTING A DATA REQUEST: Complete form and send to Amanda Rowe Request will be reviewed by the appropriate Registry staff If approved, the request will be processed and programmed. Results are usually provided within 2 weeks of being received by analytical staff. TYPES OF DATA AND ANALYSES: Datasets (patients and centers will not be identified) Simple descriptive statistics Multivariate analyses -- may require more extensive review