Organ Donation and Transplantation Registries Across the Globe: A Review of the Current State

• Published in: Transplantation
• Main Authors: Rampersad, Christie, Ahn, Curie, Callaghan, Chris, Dominguez-Gil, Beatriz, Ferreira, Gustavo F., Kute, Vivek, Rahmel, Axel O., Sarwal, Minnie, Snyder, Jon, Wang, Haibo, Wong, Germaine, Kim, S. Joseph
• Format: Article in Journal/Newspaper
• Language: English
• Published: Ovid Technologies (Wolters Kluwer Health) 2024
• Subjects: Antarc*
• Online Access: http://dx.doi.org/10.1097/tp.0000000000005043; https://journals.lww.com/10.1097/TP.0000000000005043

Background. The current landscape of organ donation and transplantation (ODT) registries is not well established. This narrative review sought to identify and characterize the coverage, structure, and data capture of ODT registries globally. Methods. We conducted a literature search using Ovid Medline and web searches to identify ODT registries from 2000 to 2023. A list of ODT registries was compiled based on publications of registry design, studies, and reports. Extracted data elements included operational features of registries and the types of donor and recipient data captured. Results. We identified 129 registries encompassing patients from all continents except Antarctica. Most registries were active, received funding from government or professional societies, were national in scope, included both adult and pediatric patients, and reported patient-level data. Registries included kidney (n = 99), pancreas (n = 32), liver (n = 44), heart (n = 35), lung (n = 30), intestine (n = 15), and islet cell (n = 5) transplants. Most registries captured donor data (including living versus deceased) and recipient features (including demographics, cause of organ failure, and posttransplant outcomes) but there was underreporting of other domains (eg, donor comorbidities, deceased donor referral rates, waitlist statistics). Conclusions. This review highlights existing ODT registries globally and serves as a call for increased visibility and transparency in data management and reporting practices. We propose that standards for ODT registries, a common data model, and technical platforms for collaboration, will enable a high-functioning global ODT system responsive to the needs of transplant candidates, recipients, and donors.