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Major Contributors to the ISHLT Transplant Registry

THE REGISTRY OF THE INTERNATIONAL SOCIETY FOR HEART AND LUNG TRANSPLANTATION: NINETEENTH ANNUAL REPORT. Major Contributors to the ISHLT Transplant Registry. We wish to extend our sincere thanks to the many thoracic transplant surgeons, physicians and data

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Major Contributors to the ISHLT Transplant Registry

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  1. THE REGISTRY OF THE INTERNATIONAL SOCIETY FOR HEART AND LUNG TRANSPLANTATION: NINETEENTH 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 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. 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 REGISTRY STEERING COMMITTEE

  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

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