2019 – present
Funder:
National Institute of Health (NIH)
Contact Person:
Rachel E. Patzer, PhD, MPH
Description
The Early Steps to Transplant Access Registry (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. These are important steps in the transplant process that are not currently captured in national surveillance data such as the United States Renal Data System and the United Network for Organ Sharing. First, in 2012, the three kidney transplant centers in the state of Georgia collaborated to establish feasibility of data collection and reported on the extreme variation in dialysis facility-level referral for transplant (ranging from 0% to nearly 80% across Georgia dialysis facilities). Next, our SEKTC next collected these data among all 9 of the transplant centers in GA, NC, and SC and also documented variation in both referral and evaluation start. In 2020, data collection expanded to include 13 states across four regions (the Southeast, Northeast, New York, and the Ohio River Valley), and new transplant centers are welcome to submit data. These data are linked with the United States Renal Data System surveillance data annually.
More information about the project, including how to participate, benefits of participating, the data dictionary, and data use agreements, is available here.
Achievement
1. Early Steps to Transplant Access Registry Dashboard
The Early Steps to Transplant Access Registry Dashboard is an interactive dashboard that provides transparency about how the kidney transplantation network monitors equity in access to transplants. It provides health equity information for each dialysis facility on three measures, specifically: referral rate, evaluation start rate, and waitlisting rate, across different races, ethnicity, sex, and age.
2. Key Publications
SEKTC 