Major Contributors to the ISHLT Transplant Registry

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

2. Major Contributors to the ISHLT Transplant Registry

3. 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. ISHLT International Heart and Lung Transplant RegistryProposed 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: • 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 RegistryProposed 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

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

7. Goals of New Registry Structure(cont’d) • 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 increased the number of required fields • Increase the number of reporting agreements with non-US government regulatory agencies (i.e, Swiss Transplant, France Transplant, Scandia Transplant, etc.)

8. 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

9. General Registry Statistics

10. REGISTRY DATABASE:Number of Transplants Performed

11. REGISTRY DATABASE:Number of Centers Reporting Transplants

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

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

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

15. APPENDIX

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. Centers Reporting to the ISHLT Transplant Registry

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

38. 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