For the more than 800,000 Americans living with end-stage kidney disease, the distance between dialysis and transplantation is not measured only in organ scarcity — it is measured in referrals delayed, evaluations deferred, and a system whose early failures have gone largely unseen. A new registry called E-STAR, spanning 37 transplant centers across 13 states, has for the first time brought those early failures into focus, revealing that progress at the front door of the transplant process is being quietly undone by bottlenecks just inside it. The data arrives not as a verdict but as a map — o
E-STAR report reveals critical delays in early kidney transplant access steps
Over 800,000 Americans with end-stage kidney disease remain on dialysis due to organ shortages and access barriers, facing reduced survival rates and quality of life compared to transplant recipients.
Many barriers to transplantation occur before patients reach the waiting list
Mark
Why does it take so long for someone to move from being referred to actually starting their evaluation?
Mimi
The report doesn't name a single cause, but the variation across centers suggests it's a mix of things—staffing, how centers prioritize cases, how well dialysis facilities and transplant programs communicate. Some centers are clearly doing it fast; others are not.
Mark
So if you're at a center that only evaluates 1.6 percent of referred patients within three months, what happens to the other 98 percent?
Mimi
They wait. Some eventually get evaluated. Some probably give up or die before they ever get the chance. The report doesn't say, but that's the human reality behind the numbers.
Mark
The referral rate went up. Isn't that good news?
Mimi
It is, but it's incomplete. Getting referred is the first step. If you're referred but then stuck in a queue for months, the referral doesn't help you. You need the whole pipeline to move.
Mark
What would actually fix this?
Mimi
The report suggests better communication between dialysis facilities and transplant centers, clearer support for patients, and more consistent practices. But it also implies that some centers have figured it out—they're evaluating three-quarters of referred patients quickly. So the knowledge exists. It's about spreading it.
Mark
Is this a resource problem or a will problem?
Mimi
Probably both. Some centers may not have enough staff. But the huge variation suggests that resources alone don't explain it. Two centers with similar resources can have very different outcomes. That points to how they organize their work, their priorities, their systems.
Il Polso
- Referral rates have climbed steadily over nearly a decade, but the momentum stops almost immediately after: fewer than one in four referred patients now begins their medical evaluation within three months, down sharply from four in ten just years ago.
- The variation across centers is staggering — evaluation initiation rates range from 1.6% to 76.6%, meaning a patient's geography and chosen center can be as decisive as their medical condition in determining whether they move forward.
- Over 800,000 Americans remain on dialysis, facing diminished survival odds and lives structured around machines, while a transplant system that could help them stalls at its earliest and least-monitored stages.
- E-STAR's annual report is the first national effort to systematically document these pre-waitlist phases, giving transplant programs, dialysis facilities, and policymakers a shared view of where patients are being lost.
- Researchers at Regenstrief Institute are pressing for concrete reforms — clearer communication between transplant centers and dialysis facilities, stronger patient navigation support, and more consistent practices — to convert data into action.
For the more than 800,000 Americans living with end-stage kidney disease, the distance between dialysis and transplantation is not measured only in organ scarcity — it is measured in referrals delayed, evaluations deferred, and a system whose early failures have gone largely unseen. A new registry called E-STAR, spanning 37 transplant centers across 13 states, has for the first time brought those early failures into focus, revealing that progress at the front door of the transplant process is being quietly undone by bottlenecks just inside it. The data arrives not as a verdict but as a map — one that the transplant community, policymakers, and patients can finally use to find their way through.
More than 800,000 Americans live with end-stage kidney disease, and for most of them, a transplant — the treatment most likely to extend their lives — remains out of reach. Organ scarcity is part of the story, but a quieter problem has gone largely unmeasured: the early steps of the transplant process, the referrals, evaluations, and waitlisting decisions that happen long before any organ is offered, have been failing patients in ways the system could not fully see.
A registry called E-STAR, managed by the Transplant Research for Enhancing Access Team at Regenstrief Institute, is changing that. Its 2026 annual report draws on data from 37 transplant centers across 13 states to produce an unprecedented picture of where patients get stuck. The findings are a study in contradictions. Referral rates have genuinely improved, rising from 24.3 percent in 2015 to 33.4 percent in 2023, a gain that even survived the disruptions of the COVID-19 pandemic. But once referred, patients encounter a deepening bottleneck: the share who begin their medical evaluation within three months has fallen from 42 percent to just 24.3 percent, and waitlisting rates have remained flat at roughly 26 percent.
The variation across centers makes the picture more troubling still. Between 2022 and 2024, evaluation initiation rates ranged from 1.6 percent at some centers to 76.6 percent at others — a gap so wide it suggests that where a patient happens to live, and which center evaluates them, can be as consequential as their medical condition. Some facilities have built systems that move patients forward; others have not, and the human cost falls on those waiting.
Rachel Patzer of Regenstrief Institute has argued that the most significant barriers to transplantation occur before a patient ever reaches the waiting list. E-STAR's purpose is to make those barriers visible and measurable. Adam Wilk, deputy director of TREAT, emphasizes that the data is meant to be actionable — a tool for transplant programs, dialysis organizations, and policymakers to identify where coordination breaks down and where targeted reforms could open the path for patients who are currently left behind.
More than 800,000 Americans are living with end-stage kidney disease, and for most of them, the path to a transplant—the treatment that would extend their lives and improve their daily existence—remains blocked. They stay on dialysis instead, tethered to machines and schedules, because organs are scarce and the system that moves patients toward transplantation is riddled with delays that no one has fully mapped until now.
A new registry called E-STAR, managed by the Transplant Research for Enhancing Access Team at Regenstrief Institute, has begun to document what those delays look like. The 2026 Early Steps to Transplant Access Registry Annual Data Report pulls together information from 37 transplant centers across 13 states, creating what researchers describe as an unprecedented view of the early stages of the transplant process—the referral, evaluation, and waitlisting steps that happen before a patient ever receives an organ. Historically, national data systems have largely ignored these early phases, leaving the transplant community without clear visibility into where patients get stuck.
The numbers reveal a system in tension. Referral rates have improved: the percentage of patients referred for transplant evaluation within a year of starting dialysis climbed from 24.3 percent in 2015 to 33.4 percent in 2023, a gain that persisted even after the COVID-19 pandemic disrupted care. But that progress masks a deeper problem. Once referred, patients face a bottleneck. The percentage of those who actually begin their medical evaluation within three months of referral has collapsed, dropping from 42 percent in the 2015-2018 period to just 24.3 percent by 2024. Waitlisting rates—the final early step—have remained flat at around 26 percent.
What makes these findings especially troubling is the variation they expose across the country. Between 2022 and 2024, the percentage of patients starting evaluation within three months of referral ranged from a low of 1.6 percent at some transplant centers to a high of 76.6 percent at others. That is not a small difference. It suggests that where a patient lives and which center evaluates them can determine whether they move forward or languish. Some facilities have built systems that work; others have not, and patients pay the price.
Rachel Patzer, president and CEO of Regenstrief Institute and director of TREAT, frames the problem clearly: many of the most significant barriers to transplantation occur before a patient is ever added to the waiting list. The early steps—referral, evaluation, approval—are where the system fails most patients. By measuring these stages, E-STAR aims to help the transplant community see exactly where delays happen and which patients are most affected. Adam Wilk, deputy director of TREAT, emphasizes that the goal is to generate actionable data, information that transplant programs, dialysis organizations, policymakers, and patient advocates can use to actually improve access.
The report points to opportunities for clearer communication between transplant centers and dialysis facilities, stronger support for patients navigating the process, and more consistent practices across programs. Patient stories embedded in the research highlight how confusion and lack of coordination can derail someone's path to transplantation. These are not abstract problems. They affect real people who could live longer, healthier lives with a transplant but instead remain on dialysis, facing reduced survival rates and a quality of life constrained by the demands of the treatment itself.
Citazioni salienti
Many of the most important barriers to transplantation occur before a patient is ever added to the waiting list.— Rachel Patzer, president and CEO of Regenstrief Institute
The goal is to generate actionable data that helps more patients successfully move through the transplant process.— Adam S. Wilk, deputy director of TREAT
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