Recipient and donor contact following unrelated allogeneic hematopoietic cell transplantation: The Canadian Blood Services' stem cell registry experience

BACKGROUND: Communication between recipients and their unrelated donors following hematopoietic cell transplantation (HCT) presents an important aspect of human connection that remains underreported. Characterizing recipient-donor contact within the Canadian Blood Services Stem Cell Registry (CBS SCR) and summarizing international registry policies provides a novel perspective on HCT care. STUDY DESIGN AND METHODS: Recipient-donor contact requests directed to the CBS SCR between 2022 and 2024 were analyzed. Policies concerning anonymous and direct recipient-donor contact from international donor registries accredited by the world marrow donor association (WMDA) were retrieved and compared. RESULTS: A total of 325 recipient-donor contact requests were submitted to CBS SCR during the study period, representing 18.6% of implicated unrelated donor transplants. Most commonly, requests (79%, n = 257) involved an international donor and Canadian recipient, and 62% (n = 202) were initiated by recipients or their families. There were 83 (26%) unsuccessful contact requests (52, or 63% initiated by donors). Recipient death was the most common reason for an unsuccessful contact request (n = 32, 39%). Anonymous contact between recipients and donors is permissible by 58 of 64 (91%) international registries that provided policy information to WMDA, while direct contact is permitted by 28 (44%) after a period ranging from 1 to 5 years. DISCUSSION: Our findings highlight significant interest in recipient-donor communication and contact. We identified significant variability across international registry policies. We recommend a simplified and standardized policy that could increase successful recipient donor communication and augment visibility that could be leveraged to enhance recruitment of motivated potential donors.