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Patients with blood-related diseases often cannot identify a matched related donor and must seek donors in unrelated donor registries. These registries face the challenge of ensuring that potential donors are available when contacted. Donor attrition is especially problematic when there is only a single perfectly matched potential donor. One way to improve donor availability might be to present perfectly matched donors (high-priority donors [HPDs]) with more precise information about their match status. This project evaluated the impact of providing such information to HPDs at the National Marrow Donor Program (NMDP)/Be The Match. Objectives were to determine the acceptability of the new messaging to both HPDs and the donor contact representatives (DCRs) who delivered the message, consistency of message delivery, and whether the new messaging was associated with improved donor availability. Mixed methods were used to collect telephone interview data from HPDs, matched samples of non-HPDs, and DCRs. Donor availability data came from NMDP records. Key findings were as follows: (1) the HPD message was acceptable to potential donors and did not seem to produce undue pressure, (2) the message was acceptable to DCRs who became more comfortable and consistent in delivering the message over time, but (3) the new messaging did not significantly increase availability. Despite the lack of evidence for increased availability, there may be ethical benefits and little harm to providing well-matched donors with more information about their degree of matching. Research should examine stronger match status messages and delivery of new messaging to additional highly-matched donor groups.

According to the Standards of the World Marrow Donor Association (WMDA), unrelated stem cell donor registries and donor centers are responsible for compliance of their collection and apheresis centers with these Standards. To ensure high stem cell product quality and high standards for safety and satisfaction of voluntary unrelated stem cell donors, we here present guidelines for audits of collection and apheresis centers that can be used by new and established donor registries, as well as by collection centers in preparation of audits. We define the general requirements and recommendations for collaboration with the collection and apheresis centers and define critical procedures for the collection of the stem cell product, such as information session, medical assessment, product collection, quality controls, product handover for transportation, and donor follow-up. The specific guidelines are accompanied by detailed checklists and forms that can be found in Supplementary Information and may be used during an initial or follow-up on-site or paper-based audit.

There are more than 30 million potential unrelated hematopoietic progenitor cell (HPC) donors listed on international registries, but 30% to 50% are unavailable after matching a patient. In the United States racial/ethnic minorities opt out of donation at higher rates, and a previous study identified factors associated both with attrition and ethnic group membership. Attrition among minorities is also higher in the Anthony Nolan UK registry (35% in white British [WB] and 56% in nonwhite British [NWB]), but it is not clear what factors produce higher attrition in the United Kingdom and whether they are similar to those found in the United States. Three hundred fifty-seven UK potential donors who matched a patient completed a questionnaire. Key factors were compared by donation decision (continue or opt out) and by race/ethnicity (WB versus NWB). The pattern of UK results was compared with that of the previous US study for variables assessed in both studies. Across WB and NWB donors, higher attrition was associated with poorer physical/mental health, greater ambivalence, and more concerns about donation. Donors who opted out also reported less interaction with the registry, and 16% indicated that more interaction with the registry would have changed their decision. Those opting out of the registry and minorities were both more likely to report religious objections to donation and to mistrust the fairness of HPC allocation. The pattern of findings was similar in UK and US samples. Registries should maintain contact with potential donors after recruitment, aiming to educate members about the donation procedure and to address potential misconceptions associated with religious beliefs and HPC allocation.

Large international registries of potential unrelated hematopoietic stem cell (HSC) donors, including the National Marrow Donor program (NMDP), continue to face difficulties finding matched donors for racial/ethnic minorities. One reason, in addition to the generally less common HLA types among minority patients, is the much higher registry attrition rate of racial/ethnic minorities compared with whites. Reasons for the higher attrition among minority potential donors remain unexplained. The goal of our cross-sectional telephone interview study was to generate a diverse sample of potential HSC donors who have preliminarily matched a patient and to identify factors associated with race/ethnicity and with the decision to continue toward potential donation or to opt out of the registry. Multiple culturally related, psychosocial, and donation-related factors were associated both with race/ethnic group membership and attrition from the registry. The most consistent factor associated with opting out of the registry across all race/ethnic groups was ambivalence about donation: doubts and worries, feeling unsure about donation, wishing someone else would donate in one's place. Our findings suggest that universal donor recruitment and management approaches based on reducing donation-related ambivalence and tailored messages and strategies for each of the individual race/ethnic groups are important.

HLA matching is the dominant controllable donor-recipient factor determining the outcome of adult unrelated donor hematopoietic cell transplantation. Beyond HLA, donor selection is often based on donor characteristics such as age, sex, parity, cytomegalovirus (CMV) serostatus, and ABO blood type. The published evidence to suggest these additional factors are important determinants of survival is weak and is sometimes conflicting. Other factors may be more important for optimal donor selection than the traditional non-HLA factors. These include the donor's geographic location, the performance history of the groups managing the donor, a priori knowledge of the donor's willingness/availability, and others. Implementation of tools to expose this additional donor-related information could significantly alter and aid unrelated donor selection practices.