THE REGISTRY OF THE INTERNATIONAL SOCIETY FOR HEART

THE REGISTRY OF THE INTERNATIONAL SOCIETY FOR HEART AND LUNG TRANSPLANTATION: NINETEENTH ANNUAL REPORT ISHLT 2002

Major Contributors to the ISHLT Transplant Registry Eurotransplant (ET): Austria Netherlands Belgium Slovenia Germany United Kingdom Transplant Services Authority (UKTSSA): United Kingdom Ireland United Network for Organ Sharing (UNOS): United States 75 Individual centers from Canada, Central/South America, Europe, Asia, Australia, and Africa (reporting transplants since 1995) ISHLT 2002

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. ISHLT 2002

ISHLT International Heart and Lung Transplant Registry Proposed Mission Statement (8/24/01) 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; ISHLT 2002

ISHLT International Heart and Lung Transplant Registry Proposed Mission Statement (8/24/01) (cont’d) 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 ISHLT 2002

Goals of New Registry Structure 1. Increase the number of publications/studies using Registry data 2. Increase the number of non-US reporting centers 3. Optimize the data quality and integrity 4. Improve the process of receiving, processing and fulfilling data and analysis requests 5. Develop sources of external funding 6. Develop a formal publication policy regarding the use of Registry data 7. Increase the number of centers reporting data online 8. Redefine and improve the working relationship with UNOS Registry staff ISHLT 2002

Goals of New Registry Structure (cont’d) 9. Optimize the value and image of the Registry to the Society, its members, and the external research community 10. Identify patient-related organizations and pharmaceutical companies and make them aware of the Registry as a resource 11. Restructure the data fields into a tiered system and increased the number of required fields 12. Increase the number of reporting agreements with non. US government regulatory agencies (i. e, Swiss Transplant, France Transplant, Scandia Transplant, etc. ) ISHLT 2002

REGISTRY STEERING COMMITTEE Marshall Hertz – Medical Director Elbert Trulock – Associate Director for Lung Transplantation David O. Taylor – Associate Director for Heart Transplantation Mark Boucek – Associate Director for Pediatric Transplantation Paul Mohacsi – Associate Director for Non-US Centers Amanda Rowe – ISHLT Executive Director Berkeley Keck – Associate Director for Database Management Leah Bennett Edwards – Associate Director for Data Analysis ISHLT 2002

General Registry Statistics ISHLT 2002

REGISTRY DATABASE: Number of Transplants Performed ORGAN Heart Transplants Reported Through 2001 61533 Heart-Lung 2935 Lung 14588 ISHLT 2002

REGISTRY DATABASE: Number of Centers Reporting Transplants Centers with % of 2001 Continuous centers that reporting are continuous through reporters 2001 Organ Ever Reported Data Centers Reporting Transplants in 1993 Centers Reporting Transplants in 2001 Heart 328 230 200 183 91. 5 Heart. Lung 128 60 35 15 42. 9 Lung 181 102 99 82 82. 8 ISHLT 2002

REGISTRY DATABASE: Number of Centers Reporting Heart Transplants ISHLT 2002 * Numbers may be low due to delayed reporting

REGISTRY DATABASE: Number of Centers Reporting Lung Transplants ISHLT 2002 * Numbers may be low due to delayed reporting

REGISTRY DATABASE: Number of Centers Reporting Heart-Lung Transplants ISHLT 2002 * Numbers may be low due to delayed reporting

APPENDIX ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT x x St. Vincent x x The Prince Charles Hospital x x COUNTRY/Center ARGENTINA Fundacion Favaloro AUSTRALIA The Alfred Hospital x Royal Perth Hospital x x University of Vienna x x Innsbruck University Hospital x x University Klin fur Chir (Graz) x x Erasme Univ. Hospital (Brussels) x x Univ. Hospital Gasthuisberg (Leuven) (Cont’d) x x AUSTRIA BELGIUM ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT University Hospital Antwerp x x OLV Hospital (Aalst) x x University Hospital Gent x x Centre Hospitalier Universitaire de Liege, CHU Sart-Tilman x x Royal Victoria Hospital x x Montreal Heart Institute x x The Toronto General Hospital x x Quebec Heart Institute - Laval Hospital x x Ottawa Heart Institute x x COUNTRY/Center BELGIUM (cont’d) CANADA Univ. of Alberta Hospitals/ Walter C. Mackenzie Health Sciences (Cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT St. Paul x x Vancouver General Hospital x x The Hospital for Sick Children x x COUNTRY/Center CANADA (cont’d) CHILE Hospital DIPRECA x Clinica Las Condes x FRANCE Hopital Cardiolgique x x Hopital La Pitie x x Martin-Luther Universitaet Halle x x Technischen Universitaet Dresden (Cont’d) x x GERMANY Organisationsbuero des K. F. H. (Homburg/Saar) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT German Heart Institute (Berlin) x x Universitat Hamburg x x Universitaetsklinik (Koeln) x x University of Leipzig - Heart Center x x Kerckoff-Klinik der Max-Planck. Gesellschaft zur Forderung der Wissenschaften e. V. (Bad Nauheim) x x Klinikum der Universitaet (Heidelberg) x x Herz-und Diabetesentrum Nordrhein -Westfalen (Bad Oeynhausen) x x Chirurgische Universitaetsklinik/ Univ. Rostock (Freiburg Im Breisgau) x x Essen University Medical School x x I. Med. Klinik J. Gutenberg (Mainz) (Cont’d) x x COUNTRY/Center GERMANY (cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT der Heinrich-Heine-Universitat Dusseldorf x x Klinikum Gro. Bhadern, Ludwig. Maximilians-Universitat Munchen x x Klinikum der Universitat Kaiserslautern x Chirurgische Universitatsklinik Heidelberg x x Medizinische Hochschule Hannover x x Universitatsklinik Gottingen x x Klinikum der Rheinisch. Westfalischen Technischen Hochschule Aachen x x Fulda Medical Center x x COUNTRY/Center GERMANY (cont’d) (Cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT Klinikum der J. W. Goethe University (Frankfurt am Main) x x Klinikum Der Christian-Albrechts. Universtat zu Kiel x x Transplantations-Zentrum (Frankfurt) x x Friedrich Schiller Universitaet (Jena) x x Klinikum Karlsburg x Klinik fuer Herzchirurgie Karlsruhe x x Medizinische Einrichtupgen der Universiteat , Nurenberg x x Chirurgische Univ. Klinik/Julius Maxmillians Universitaet (Wurzburg) x COUNTRY/Center GERMANY (cont’d) GREECE Onassis Cardiac Surgery Center (Cont’d) ISHLT x 2002 x

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT x x Sheba Medical Center x x Hadassah University Hospital x COUNTRY/Center IRELAND Mater Hospital ISRAEL ITALY Policlinico S. Orsola - Universita degli Studi x JAPAN Tohoku University, IDAC Hospital x Osaka University Hospital x (Cont’d) ISHLT 2002 x

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT Heart-Lung Institute, University Hospital Utrecht x x Thoraxcenter - University Hospital Rotterdam x x University Hospital Groningen x x COUNTRY/Center NETHERLANDS NEW ZEALAND Green Lane Hospital NORWAY Rikshospitalet - National Hospital of Norway x SINGAPORE National Heart Centre x SLOVENIA University Medical Center Ljubljana (Cont’d) ISHLT x 2002 x

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT x x University of Alabama Hospital x x Baptist Medical Center, x x Arkansas Children’s Hospital x x The University Hospital of Arkansas x x University Medical Center, University of AZ x x Children’s Hospital Los Angeles x x Cedars Sinai Medical Center x x Loma Linda Univ. Medical Center x x COUNTRY/Center SWEDEN University Hospital of Lund SWITZERLAND Bern University Hospital UNITED STATES (Cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT California Pacific Medical Center x x UCSD Medical Center x x University of CA San Francisco Medical Center x x Sutter Memorial Hospital x x Sharp Memorial Hospital x x UC Davis Medical Center x Stanford University Medical Center x x St Vincent Medical Center x x UCLA Medical Center x x USC University Hospital x x The Children’s Hospital, Denver x x University Hospital, Denver x x COUNTRY/Center UNITED STATES (cont’d) (Cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT Hartford Hospital x x Yale New Haven Hospital x x Children’s National Medical Center x Washington Hospital Center x x All Children’s Hospital x x Jackson Memorial Hospital x x COUNTRY/Center UNITED STATES (cont’d) St Luke’s Hospital x Tampa General Hospital x x Tallahassee Memorial Hospital x x Shands Hospital at University of Florida x x Egleston Children’s Hospital x x Emory University Hospital x x (Cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT St Joseph Hospital of Atlanta x x St Francis Medical Center, Honolulu x x Univ. of Iowa Hospital and Clinics x x Children’s Memorial Hosp x x Loyola University Medical Center x x Northwestern Memorial Hospital x Rush Pres St Luke’s Medical Center x x OSF St Francis Medical Center x x St. Johns Hospital x Univ. of Chicago Medical Center x x University of Illinois Hospital x x Clarian Health-Methodist/IU/Riley x x Indiana University Medical Center (Cont’d) x x COUNTRY/Center UNITED STATES (cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT Lutheran Hospital of Ft Wayne x x St Vincent Hosp. and Health Care Ctr x x Via Christi Regional Medical Center x x Jewish Hospital x x Kosair Children’s Hospital x Univ. of Kentucky Medical Center x x Ochsner Foundation Hospital x x Tulane University Medical Center x x Willis Knighton Medical Center x x Children's Hospital, Boston x x Massachusetts General Hospital x x New England Medical Center x x Brigham and Women’s Hospital (Cont’d) x x COUNTRY/Center UNITED STATES (cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry COUNTRY/Center Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT UNITED STATES (cont’d) UMass Memorial Medical Center x Johns Hopkins Hospital x x Univ. of Maryland Medical System x x Children’s Hospital of Michigan x x Henry Ford Hospital x x Univ. of Michigan Medical Center x x Abbott Northwestern Hospital x x St Marys Hospital, Rochester x x Fairview University Medical Center x x Barnes-Jewish Hospital x x Cardinal Glennon Children’s Hospital x x St Louis Children’s Hospital x x St Lukes Hospital of Kansas City (Cont’d) x x ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT St Louis University Hospital x x Univ. of Missouri Hospital and Clinic x x University of MS Medical Center x x NC Baptist Hospital x x Carolinas Medical Center x x Duke University Medical Center x x UNC Hospitals x x Bryan LGH Medical Center East x x Newark Beth Israel Medical Center x x Robert Wood Johnson Univ. Hosp x x Presbyterian Hospital, Albuquerque x x Albany Medical Center Hospital x x The Presbyterian Hospital in NY City (Cont’d) x x COUNTRY/Center UNITED STATES (cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT COUNTRY/Center Transplants Performed in 2001 and Reported to ISHLT UNITED STATES (cont’d) Strong Memorial Hospital x Montefiore Medical Center x Mt Sinai Medical Center x x New York University Medical Center x Westchester County Medical Center x Cleveland Clinic Foundation x x Children's Hospital Medical Center, Cincinnati x x Medical College Hospital, Toledo x x Ohio State University Hospital x x Univ. of Cincinnati Medical Center x x University Hospital of Cleveland x x Integris Baptist Medical Center x x (Cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT St. Francis Hospital, Tulsa x x Providence Portland Medical Center x x Oregon Health Sciences Univ. Hosp x x Allegheny General Hospital x x Children’s Hospital of Pittsburgh x x Children’s Hospital of Philadelphia x x Penn State Milton S Hershey Med Ctr x x Hahnemann University Hospital Tenet x x Univ of Pittsburgh Medical Center x x Temple University Hospital x x The Hospital of the University of PA x x Cardiovascular Center of PR x x Medical University of SC x x COUNTRY/Center UNITED STATES (cont’d) (Cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT Baptist Memorial Hosp, Memphis x x St Thomas Hospital x x Vanderbilt University Medical Center x x Brooke Army Medical Center x x University Hospital, San Antonio x x Children’s Medical Center of Dallas x x Seton Medical Center x x Columbia Hosp at Medical City Dallas x x St Luke’s Episcopal Hospital x x Methodist Specialty & Transplant Hosp x x University of Texas Medical Branch x x The Methodist Hospital, Houston x x COUNTRY/Center UNITED STATES (cont’d) (Cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT Christus Santa Rosa Medical Center x x St Paul University Hospital x x Baylor University Medical Center x x LDS Hosp x x University of Utah Medical Center x x Primary Children’s Medical Center x x Inova Fairfax Hosp x x Henrico Doctors Hosp x x MCV Hospitals x x Mc. Guire VA Medical Center x x Sentara Norfolk General Hospital x x University of Virginia HSC x x Children’s Hosp Medical Ctr, Seattle (Cont’d) x x COUNTRY/Center UNITED STATES (cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT Sacred Heart Medical Center x x Univ. of Washington Medical Center x x Children’s Hospital of Wisconsin x x Froedtert Memorial Lutheran Hosp x x St Luke’s Medical Center x x Univ. of Wisconsin Hosp. and Clinics x x Great Ormand Street Hospital for Children x x University of Glasgow/Glasgow Royal Infirmary x x Northern General Hospital x x The Freeman Hospital x x COUNTRY/Center UNITED STATES (cont’d) UNITED KINGDOM (Cont’d) ISHLT 2002

Centers Reporting to the ISHLT Transplant Registry Transplants Performed in 2000 and Reported to ISHLT Transplants Performed in 2001 and Reported to ISHLT Harefield Hosp x x Wythenshawe Hospital x x St. George's Hospital x Queen Elizabeth Hospital x x Papworth Hospital x x COUNTRY/Center UNITED KINGDOM (cont’d) ISHLT 2002

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 Denise Wise to obtain an ID and password 3. Registry Report slides will be available for download from the ISHLT web site on August 1. ISHLT 2002

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, request will be processed and programmed. • Results are usually sent out within 2 weeks of being received by analytical staff. DATA/ANALYSES: • Datasets (patients and centers will not be identified) • Simple descriptive statistics • Multivariate analyses -- may require more extensive review ISHLT 2002