Transforming transplantation access: A federal directive for comprehensive pre-waitlisting data collection

There is substantial variation in access to transplantation across the United States that is not entirely explained by the availability of donor organs. Barriers to transplantation and variation in care among patients with end-stage organ disease exist prior to patients’ placement on a transplant waiting list as well as following waitlist placement. However, there are currently no national data available to examine rates and variations in key care processes related to prelisting, including transplant referral, evaluation, or candidate selection. In February of 2024, the Health Resources and Services Administration released a directive and, in November 2024, released for public comment the proposed expansion of the Organ Procurement and Transplantation Network data collection to include pre-waitlist data for all solid organ transplant patients to promote transparency across the transplant continuum. Although data elements and details have not been finalized, the purpose of this article is to detail the rationale and anticipated details for pre-waitlisting data collection to inform the transplant community. These data aim to examine care processes and barriers to care for patients with end-stage organ disease in the United States.