Showing 1 – 3 of 3 results.
Self-published
Evaluating ApoL1 Genetic Testing Policy Options for Transplant Centers: A Delphi Consensus Panel Project with Stakeholders (ICPSR 197009)
Released/updated on: 2024-01-09
Geographic coverage: United States
In many transplant centers, potential donors are being tested for ApoL1 genetic variants that are associated with an increased risk of kidney disease. These variants are primarily seen in people with African ancestry. While this testing might improve transplant outcomes and living donor safety, it generates concerns about how we select people for testing and how results are returned, shared, and used. We conducted a Delphi consensus panel with 27 diverse stakeholders. The panel recommended that transplant programs ask about African ancestry rather than race and make testing decisions only after having discussions with donors. They encouraged disclosure of test results to blood relatives and organ recipients but do not recommend requiring disclosure. They also encourage using test results to inform decision-making but never for unilateral decisions by transplant programs.
External data
United States Renal Data System (USRDS) (ICPSR 34413)
Released/updated on: 2012-10-10
Geographic coverage: United States
The United States Renal Data System (USRDS) is a national data system that collects, analyzes, and distributes information about end-stage renal disease (ESRD) in the United States. The USRDS is funded directly by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). USRDS staff collaborates with members of Centers for Medicare and Medicaid Services (CMS), the United Network for Organ Sharing (UNOS), and the ESRD networks, sharing datasets and actively working to improve the accuracy of ESRD patient information.
Curated
End-Stage Renal Disease (ESRD): Transplantation, Dialysis, and Quality of Life in Michigan, 1984-1988 (ICPSR 9393)
Released/updated on: 1992-02-17
Geographic coverage: United States, Michigan
Time period: 1984-01-01--1988-12-31
This study investigated survival rates, quality of life, and costs of four major treatments for end-stage renal disease (ESRD) patients in Michigan. The project began in 1984 and continued through 1988. The four treatments studied were in-center hemodialysis, continuous ambulatory peritoneal dialysis (CAPD), transplantation from nonrelated, nonliving donors (cadaver transplants), and transplantation from related living donors (related transplants). A major advantage for the project in relation to other large-scale research studies on ESRD patients was access to comprehensive data bases maintained by the Michigan Kidney Registry (MKR) and the Organ Procurement Agency of Michigan (OPAM) to identify the sample and provide treatment and survival data. Records on medical expenditures for treatment were obtained from the United States' Health Care Financing Administration. Data on the quality of life during treatment were collected by personal interviews with patients over the four-year span needed to accumulate the desired number of cases. The personal interview schedule included measures of subjective well-being, such as mood states, satisfaction with various aspects of life, and other widely-used scales such as Activities of Daily Living, Sickness Impact Profile, and Bradburn Affect Balance Scale. Items on standard demographics, the clinical and symptomatic picture of the disease, and the respondents' social support systems were also included in the interview.