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

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.

A Standardized Education Program on Deceased Organ and Tissue Donation for Premedical and Medial Students in Korea.

Background: As the imbalance in organ demand and supply is getting worse, <1000 patients waiting for organ transplants die each year in South Korea. To enhance positive attitudes to deceased organ-tissue donation through systematic education, we developed an educational program with delivery pathways for premedical and medical students. Methods: Online and offline self-learning educational materials on deceased organ-tissue donation were generated and posted on the Vitallink Academy YouTube site. Thirty-two pre- and 15 posteducation questionnaires were developed using a web-based survey platform, and conducted before and immediately after the education process. The education proceeded in 3 steps: (1) group study sessions on selected topics, (2) poster submissions by each group and the selection of excellent poster by the organizing committee, and (3) excellent poster presentation and questions and answers. Results: A total of 141 students in the first year of premedical classes at the Seoul National University College of Medicine participated in this program. Only 24.2% of responders agreed that anyone who was diagnosed with brain death should donate. The proportion of students with positive attitudes toward organ-tissue donation increased from 74.7% to 97.7% (P < 0.001) with our education. Likewise, interest in deceased organ-tissue donation-related issues increased from 33.3% to 84.9% (P < 0.001). The expressed willingness for organ-tissue donation also increased from 76.8% to 96.5% (P < 0.001). The proportion of accepting brain death as the determination of death increased from 61.6% to 89.5% (P < 0.001). Moreover, 81.4% changed their approach and planned to register with an organ donor card. Conclusions: In this study, significant improvements were observed in knowledge, awareness, and attitude toward organ-tissue donation with our newly developed co-participatory education program for premedical students. Hence, target-specific education can be regarded as a valuable approach to enhancing public awareness of deceased organ-tissue donation.

Validation of a Core Patient-Reported Outcome Measure for Life Participation in Kidney Transplant Recipients: the SONG Life Participation Instrument.

Introduction: Life participation has been established as a critically important core for trials in kidney transplantation. We aimed to validate a patient-reported outcome measure for life participation in kidney transplant recipients. Methods: A psychometric evaluation of the Standardized Outcomes in Nephrology life participation (SONG-LP) measure was conducted in adult kidney transplant recipients. The measure includes 4 items of life participation (leisure, family, work, and social) each with a 5-point Likert scale. Each item is scored from 0 (never) to 4 (always) and the summary measure score the average of each item. Results: A total of 249 adult kidney transplant recipients from 20 countries participated. The SONG-LP instrument demonstrated internal consistency (Cronbach's α = 0.87; 95% confidence intervals [CI]: 0.83-0.90, baseline) and test-retest reliability over 1 week (intraclass correlation coefficient of 0.62; 95% CI: 0.54-0.70). There was moderate to high correlation (0.65; 95% CI: 0.57-0.72) with the PROMIS Ability to Participate in Social Roles and Activities Short Form 8a that assessed a similar construct, and moderate correlation with measures that assessed related concepts (i.e., EQ5D 0.57; 95% CI: 0.49-0.65), PROMIS Cognitive Functional Abilities Subset Short Form 4a (0.40; 95% CI: 0.29-0.50). Conclusion: The SONG-LP instrument is a simple, internally consistent, reliable measure for kidney transplant recipients and correlates with similar measures. Routine incorporation in clinical trials will ensure consistent and appropriate assessment of life participation for informed patient-centered decision-making.