National registry data reveal opportunities to improve referral, evaluation and waitlisting for patients with kidney failure
Chronic kidney disease affects millions of Americans, and more than 800,000 people in the United States are living with end-stage kidney disease. While kidney transplantation is widely recognized as the preferred treatment for eligible patients, offering longer survival and improved quality of life, many remain on dialysis because of organ shortages and barriers that limit access to all steps in the process of receiving a transplant.
A new report from the Transplant Research for Enhancing Access Team (TREAT) at Regenstrief Institute provides one of the most comprehensive looks to date at these early steps in the transplant process. The 2026 Early Steps to Transplant Access Registry (E-STAR) Annual Data Report highlights trends in transplant referral, evaluation and waitlisting and identifies opportunities to improve access for patients across the United States.
“Many of the most important barriers to transplantation occur before a patient is ever added to the waiting list,” said Rachel Patzer, president and CEO of Regenstrief Institute and director of TREAT. “By measuring these early steps, E-STAR helps the transplant community better understand where patients encounter delays and where improvements can have the greatest impact.”
Before receiving a transplant, patients must navigate a series of critical steps, including referral to a transplant center, medical evaluation, and approval and placement on the waitlist. Historically, national data systems have provided little information about these early stages of care, making it difficult to identify where delays occur and which patients are most affected.
E-STAR and the E-STAR Annual Data Report was created to address this gap.
Today, E-STAR includes data from 37 transplant centers across 13 states and four major End-Stage Renal Disease Network regions, creating an unprecedented view of the transplant access pathway. By capturing information on referral and evaluation, E-STAR provides insights that are not available through traditional national transplant datasets.
Among the report’s key findings:
- Referral for transplant evaluation within one year of dialysis initiation increased from 24.3 percent in 2015 to 33.4 percent in 2023, following a decline during the COVID-19 pandemic.
- Evaluation initiation within three months of referral continues to decline, reaching 24.3% in 2024, down from 42% between 2015 and 2018.
- Waitlisting within six months of evaluation remained relatively stable, reaching 26 percent in 2024.
- Significant variation exists across transplant centers and dialysis facilities. Between 2022 and 2024, the percentage of patients starting the evaluation within three months of referral ranged from 1.6 percent to 76.6 percent across transplant centers.
- Patient stories highlight opportunities for clearer communication and stronger support throughout the process
These findings highlight opportunities for transplant programs, dialysis organizations, policymakers and patient advocates to improve access to transplantation, particularly during the earliest stages of the process.
“E-STAR provides a foundation for understanding who is reaching the transplant pathway, where patients experience delays and how access can be improved,” said Adam S. Wilk, deputy director of TREAT and research scientist at Regenstrief Institute. “The goal is to generate actionable data that helps more patients successfully move through the transplant process.”
Additional E-STAR Annual Data Report contributors include: Mengyu Di, MSPH; Jade Buford, MPH; Katie Ross-Driscoll, PhD, MPH; Kelsey Drewry, PhD, M.A.; Kristopher Huffman, M.S.; Vince Fontanetta (patient partner); Jessica Harding, PhD (Emory School of Medicine); Stephen Pastan, M.D. (Emory Transplant Clinic and School of Medicine).
The registry was developed through a broad collaboration of transplant centers, researchers, clinicians and patient partners committed to improving access to kidney transplantation. Data collected through E-STAR have been supported by the National Institute on Minority Health and Health Disparities and the National Institute of Diabetes and Digestive and Kidney Diseases. Development of the Annual Report was supported by Veloxis Pharmaceuticals.
The full 2026 E-STAR Annual Data Report is available here.
