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Transplant Website Review
EasyLink Access #: 483
By Jacqueline Harris, RN, BSN, CCTC
This will be an on-going installment featuring websites for patients to access transplant information. Hopefully through this series you’ll learn about some websites that you’ve not heard of prior, or find new areas of interest on old sites, and can gain additional information that’s helpful for you.
Today’s feature site is US Transplant, at www.ustransplant.org. I’ve been a huge fan of this particular site for many, many years, as it gives volumes of center specific information as well as nationwide stats. I reference it frequently for data that I need to gather for lectures, 1:1 talks with patients regarding their particular situation as well as to just stay current on transplant statistical information. There are areas to check national stats, local hospital & OPO stats and research resources.
The Scientific Registry of Transplant Recipients (SRTR) is funded by the US Department of Health and Human Services and is administered by Arbor Research Collaborative for Health at the University of Michigan. The registry provides useful information about transplant outcomes and transplant programs for patients and their families. While much of the data focus on statistical research that helps shape organ allocation policy and health care practices, the registery also includes stats for patients.
These include outcomes concerning patients on the waiting list and those who receive transplants. Patients and families can also learn how these statistics differ from one transplant program to the next. It can be beneficial for those just starting out & researching transplant hospitals that they want to be listed at as well as for those patients checking in on that hospital that perhaps they’re already listed at.
The SRTR supports the ongoing evaluation of the scientific and clinical status of solid organ transplantation in the United States. Administrator responsibilities include designing and carrying out rigorous scientific analyses of data and disseminating that information to the transplant community. The U.S. organ transplantation system employs evidence-based allocation policy development through collaborative efforts between the transplant community, the SRTR, and the Organ Procurement and Transplantation Network (OPTN, administered by the United Network for Organ Sharing, UNOS).
While policy-making is the OPTN's responsibility, the SRTR plays a critical role in policy development through ongoing development of statistical, analytic, and simulation models responsive to policy goals. The entire system benefits from transparency, consensus, and cooperation among all interested parties including the public, the SRTR, the OPTN, the Health Resources and Services Administration (HRSA), and the Advisory Committee on Organ Transplantation (ACOT). A great resource is the content of the registry's Annual Report that shows:
- Over 250 tables of comprehensive transplant data, showing both recent activity and 10-year trends
- Nine chapters with analysis and explanation of the data tables prepared by more than 40 national experts, including three "special focus" articles on transplant tourism, kidney allocation, and performance measures
- Examinations of trends in waiting list patient counts and characteristics
- Analyses of transplantation by organ, including patient outcome predictors and factors affecting patient survival
- An overview of the unique clinical and policy issues of pediatric transplantation
- A review of trends in organ donation and utilization and recent efforts to increase the number of donors
- Detailed discussions of issues frequently raised by patients, physicians, policy makers and administrators
While the site can get very statistical & somewhat overwhelming for the average patient, the information it holds is so beneficial. I found that it’s easy to maneuver through & user friendly. One can get lost for hours just checking all of the different topics! So, check out this educational website soon. Let me know what you think and if the information is helpful.
About the Author
Jacqueline Harris, RN, BSN, CCTC, is a former Kidney Transplant Coordinator at Cedars-Sinai Medical Center and the University of California, Los Angeles Medical Center. Currently, she is a Senior Executive Healthcare Specialist for Astellas Pharma US' Immunology Division. Harris is very involved with transplant education and participates in events that promote patients obtaining access to needed resources.
Last Updated December 2009
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