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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
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1 to 1 of 1 Research Studies DisplayedIsrani AK, Schladt D, Bruin MJ
Deconstructing silos of knowledge around lung transplantation to support patients: a patient-specific search of scientific registry of transplant recipients data.
This article describes the development of the web site www.transplantcentersearch.org intended to support lung transplant patients by providing program-level data from the Scientific Registry of Transplant Recipients (SRTR) on each program in the United States. There is a high level of variation in selection criteria and although nearly half of recipients reside within 50 miles of their transplant program, >30% travel 100 miles or more. The web site allows patients to search for programs in the area of their choosing and receive information on the number of transplants and program factors that are most predictive of recipient survival after listing. Patients can also review information on recipients and donors at each program to further differentiate program options. This feature is patient-specific, allowing the patient to enter information about their clinical background and indicate general preferences for their treatment before receiving counts on recipients and donors matching their entries. The development of the site involved 2 phases. In Phase I the authors examined variations between programs using data on waitlist and transplant outcomes from the SRTR. Phase II involved interviews and focus groups with transplant candidates, recipients, and family members to gain insight into the decision-making process, barriers, and knowledge groups. In the future randomized trials will be conducted to evaluate the efficacy of the web site.
AHRQ-funded; HS026379.
Citation: Israni AK, Schladt D, Bruin MJ .
Deconstructing silos of knowledge around lung transplantation to support patients: a patient-specific search of scientific registry of transplant recipients data.
Transplantation 2022 Aug;106(8):1517-19. doi: 10.1097/tp.0000000000004051..
Keywords: Transplantation, Registries, Patient-Centered Outcomes Research, Evidence-Based Practice