THE REGISTRY OF THE INTERNATIONAL SOCIETY FOR HEART AND LUNG TRANSPLANTATION: TWENTIETH ANNUAL REPORT

1. THE REGISTRY OF THE INTERNATIONAL SOCIETY FOR HEART AND LUNG TRANSPLANTATION: TWENTIETH ANNUAL REPORT

2. Major Contributors to the ISHLT Transplant Registry

3. 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. ACKNOWLEDGMENTS:

4. 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: • Create new knowledge related to advanced heart and lung failure and transplantation; • Serve as a resource for healthcare providers seeking information regarding patient care;

5. ISHLT International Heart and Lung Transplant Registry Mission Statement (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

6. Goals of Registry • Increase the number of studies using Registry data • Increase the number of non-US reporting centers • Develop sources of external funding • Optimize the value and image of the Registry to the Society, its members, and theexternal research community • Identify patient-related organizations and pharmaceutical companies and make them aware of the Registry as a resource • Restructure the data fields into a tiered system and increase the number of required fields • Increase the number of reporting agreements with non-US government regulatory agencies

7. 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 REGISTRY STEERING COMMITTEE

8. General Registry Statistics

9. REGISTRY DATABASE:Number of Transplants Reported

10. REGISTRY DATABASE:Number of Centers Reporting Transplants

11. REGISTRY DATABASE:Number of Centers Reporting Heart Transplants

12. REGISTRY DATABASE:Number of Centers Reporting Lung Transplants

13. REGISTRY DATABASE:Number of Centers Reporting Heart-Lung Transplants

14. APPENDIX

15. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

16. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

17. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

18. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

19. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

20. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

21. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

22. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

23. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

24. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

25. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

26. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

27. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

28. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

29. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

30. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

31. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

32. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

33. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

34. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

35. Centers Reporting to the ISHLT Transplant Registry (Cont’d)

36. Data Currently Available on the ISHLT Web Site: http://www.ishlt.org • 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 • 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 • Registry Report slides will be available for download from the ISHLT web site Summer 2004.

37. 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