Susan L. Smith, MN, PhD

Disclosures

March 31, 2003

Registries

The volume, accuracy, and reliability of the data available on solid organ transplantation continue to be unprecedented in medicine. To this end, registries and their databases play a critical role, and indeed many of them are referred to throughout this book. Preeminent among them is the United States Scientific Registry of Transplant Recipients (SRTR).[1] The Health Resources and Services Administration, Office of Special Programs, Division of Transplantation contracts with the University Renal Research and Education Association to administer the SRTR, the most extensive single source of information on any form of medical treatment. The SRTR is the most complete medical database in the world, tracking demographic, risk, and survival data of all solid organ transplants since October 1987.

The SRTR: A Model for Evidence-based Policy Making

The ability to monitor patient selected outcomes through large-scale national databases such as the SRTR has improved greatly during the past decade. The government, the scientific community, and the general public have Internet access to SRTR data. Patients and families use center-specific outcome data to help them evaluate their transplant options. Federal, state, and local government officials use these data to address issues related to reimbursement policy, legislative and regulatory policy, performance standards, and quality control. The scientific community and general public use these data for research, policy analysis, and evaluation of organ allocation.

Transplant Registries and Databases

During the past decade, the use of large, multi-institutional registry databases has increased significantly. These databases, used to describe and monitor trends in transplantation, have become important tools for assessing transplantation use and outcome, determining the impact of allocation policies and patient waiting, identifying prognostic factors for transplant outcomes, evaluating new transplant therapies, comparing transplant and nontransplant therapies, evaluating late transplant complications, and planning clinical trials. In addition to the SRTR, a number of other transplant registries and databases have played an important role in the evaluation of outcomes in transplantation:

 

  • Health Care Financing Administration - Medicare Database

  • United States Renal Data System

  • North American Pediatric Renal Transplant Cooperative Study

  • National Institute of Diabetes and Digestive and Kidney Diseases Liver Transplantation Database

  • Studies of Pediatric Liver Transplantation

  • Intestinal Transplant Registry

  • International Pancreas Transplant Registry

  • International Society for Heart and Lung Transplantation Heart/Lung Registry

  • International Society for Heart and Lung Transplantation Mechanical Circulatory Support Devices Database

  • Pulmonary Retransplant Registry

  • National Transplantation Pregnancy Registry

  • Israel Penn International Transplant Tumor Registry

  • Patient Outcomes Registry for Transplantation Effects on Life

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