Almost half of Americans with kidney failure who are referred for transplant never even begin the evaluation process, new research shows, revealing a massive gap between referral and waitlist placement that has received far less attention than the transplant experience itself.
A nationwide study of over 720,000 patients found that just 19 percent of those referred for kidney transplantation completed the evaluation and made it onto the waitlist. The remaining 48 percent dropped out before evaluation even started, while others fell away at various stages of the process.
The research, led by NYU Langone Health and published in the Journal of the American Society of Nephrology, is the largest examination to date of where patients leave the transplant pathway before reaching the waitlist. Researchers tracked patients through four stages: referral, evaluation, waitlist, and transplant, using data from electronic health records at over 1,850 hospitals.
"Our findings suggest that a substantial proportion of people who need a new kidney fall out of the process long before they reach the waitlist, let alone make it to the operating room," said study lead author Conor Donnelly, a resident and PhD student in the Department of Surgery at NYU Grossman School of Medicine. "Which transplant center you go to, where you live, and even whether you are married all appear to influence your chances of moving forward."
The evaluation process itself presents a formidable barrier. After referral, patients must undergo extensive medical assessment including blood tests, chest imaging, cancer screenings, and other examinations. Multiple appointments over several months are required while patients continue dialysis treatments. Only after completing these requirements can they be added to the waitlist.
Certain groups faced significantly steeper odds. Unmarried patients, those with severe obesity, and people living in rural areas were substantially less likely to begin or complete evaluation. Older adults, Spanish speakers, people with lower incomes, patients at smaller transplant centers, and those in Southern U.S. states all faced greater challenges advancing through the system.
Social factors play a critical role. Researchers identified social vulnerability as a key obstacle, encompassing poverty, unstable housing, and limited transportation. Unmarried patients may struggle to arrange repeated appointments and transportation without a support network. Urban patients, where transplant centers are typically more accessible, moved through the process more successfully.
Smaller transplant centers may be more selective with candidates due to fewer resources and available organs, researchers noted. They suggested that better patient support and education to navigate the complex process could help reduce barriers at both the evaluation and waitlisting stages.
The study examined adults referred for kidney transplantation between 2014 and 2025, using Epic Cosmos, a database containing more than 300 million electronic health records. Findings are also being presented at the American Transplant Congress, the annual meeting of the American Society of Transplantation and American Society of Transplant Surgeons.
Researchers said future work will apply similar methods to other types of organ transplantation, where the pathway to the waitlist can differ significantly.
Author Jessica Williams: "The gap between referral and waitlist represents a systemic failure to support the patients who need transplants most, and fixing it could save thousands of lives."
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