Dissecting missed pediatric priority in kidney transplantation

The National Institute of Diabetes and Digestive and Kidney Diseases awarded Indiana University Indianapolis $1,391,076 on August 15, 2026, under the Diabetes, Digestive, and Kidney Diseases Extramural Research program (CFDA 93.847) to investigate barriers to timely pediatric kidney transplantation listing.

The project, titled "Dissecting Missed Pediatric Priority in Kidney Transplant," examines why approximately 24 percent of children on dialysis fail to obtain priority listing before age 18, despite the pediatric kidney transplant allocation system's priority protection for those listed before that deadline. Preliminary data indicate that adolescents who miss priority listing face a threefold longer transplant wait time, prolonging dialysis exposure and increasing risk of irreversible complications including premature cardiovascular calcification, neurocognitive delays, and early mortality. The research aims to identify and address the systemic, clinical, and logistical factors underlying this "missed priority" gap in order to improve transplant access and patient outcomes in the approximately 5,500 U.S. children living with end-stage kidney disease.

Work is performed in Indianapolis, Indiana. The period of performance runs through April 30, 2031.

Abstract

Chronic kidney disease (CKD) is a progressive loss of kidney function which ranges from mild to severe. Pediatric CKD is due to two major categories of disease: (1) congenital anomalies of the kidney and urinary tract and (2) glomerular diseases. Stage 5 represents the most severe stage of CKD and is also known as end stage kidney disease (ESKD). Approximately 5,500 US children live with ESKD, and the annual incidence of ESKD is 15.5 cases per million for the age-related population. ESKD requires kidney replacement therapy which can take the form of transplant prior to the need for dialysis (preemptive transplant) or dialysis first with an eventual transplant. Of children with incident ESKD, 80% receive dialysis before kidney transplant. Children treated with dialysis suffer irreversible consequences that limit their future mobility and quality of life and increase their risk of mortality. These complications include premature cardiovascular calcification, poor growth, neurocognitive and physical development delays, and premature death. Mortality rates for children on dialysis are 30 times higher than children without ESKD, and cardiovascular disease remains the leading cause of death in pediatric patients treated with dialysis. Transplant helps to mitigate the cardiovascular risk and is associated with a 78% lower risk of cardiac death than dialysis. Reflecting the critical need for timely transplantation in this population, the pediatric kidney transplant allocation system provides priority to children who are listed prior to their 18TH birthday. Our preliminary data demonstrates 24% of children on dialysis miss this priority despite starting dialysis a median 2.5 years before the 18TH birthday. Adolescents who miss priority listing have a 3-fold longer wait time resulting in significantly longer time spent on dialysis. Unfortunately, the reasons behind "missed priority" remain unknown. To improve quality in waitlisting, transparency is needed around the steps that occur prior to waitlisting including the timing of and barriers to referral to a transplant center and evaluation start. Therefore, the purpose of this proposal is to adapt the early steps to transplant access registry (E-STAR) infrastructure to the pediatric nephrology population to characterize pre-waitlisting steps and identify risk factors for missed priority. Thus, the aims of this project include: quantifying missed priority rates between centers and testing the role of variation in the timing of early steps of the kidney transplantation process in mediating center differences (aim 1); identifying patient-, neighborhood-, and health system-level barriers that contribute to missed priority and determining how barriers differ across centers (aim 2); and using surveys of providers to identify patient-, interpersonal-, neighborhood- and health system-level barriers to waitlisting that are not readily available from registry data (aim 3). The findings of this study will inform future interventions to decrease missed priority within pediatric patients.