Currently, there are important steps in the transplant process that are not captured in national surveillance data such as the United States Renal Data System and the United Network for Organ Sharing.
E-STAR is a collaborative project among transplant centers to collect data on early steps in the transplant process, including referral to a transplant center and start of the transplant evaluation process. To date, E-STAR remains the only multi-region source of pre-waitlisting data in the country among 37 transplant centers in 13 states and across four major ESRD Network regions (1 – New England, 2 – New York, 6 – Southeast, and 9 – Ohio River Valley), representing >217,000 patients in 4,365 dialysis facilities. With additional linkages to United States Renal Data System (USRDS) and Scientific Registry of Transplant Recipients (SRTR) surveillance data, this unique multi-regional registry connects data from fragmented health systems to examine, for the first time, referral and evaluation rates, preemptive referral among patients with CKD, and health system quality metrics.
E-STAR data has been collected annually and used to inform quality and research initiatives to improve access to transplantation, including interventions at the dialysis facility, clinical provider, and patient levels. E-STAR data has also been used to describe dialysis facility and transplant center variation in these steps and conduct critical epidemiologic investigations of the multi-level barriers and facilitators to transplant access. This data allows us to identify dialysis facilities with the lowest rates of transplant referral and evaluation start, identify region-specific barriers, and inform future interventions to improve transplant rates and reduce disparities. Our work directly aligns with Centers for Medicare and Medicaid Services (CMS) guidelines to “promote early referral to transplant and assist patients and providers to improve referral patterns by addressing barriers”. The Early Steps to Transplant Access Registry is currently hosted and managed by the Regenstrief Institute and Indiana University.
Our goals are to:
Describe dialysis facility and transplant center differences in early steps of the kidney transplantation process, including:
1. referral for kidney transplant evaluation
2. start of the transplant evaluation process
3. placement on the national deceased donor waiting list.
Determine the patient-, neighborhood-, and health center-level barriers that explain disparities in early steps of kidney transplantation among participating ESRD Networks in the Southeast US, Northeast US, and Ohio River Valley, and determine how barriers vary across geographic region.
Early Steps to Transplant Access Registry (E-STAR) 