Efforts of the United States’ National Marrow Donor Program and Registry to improve utilization and representation of minority donors

Abstract

Haematopoietic stem cell transplantation is often used as a therapy for patients with certain blood, metabolic or immune system disorders. The United States' National Marrow Donor Program (NMDP) works to facilitate such life-saving transplants by coordinating the donor search and match process. However, concern exists that the NMDP Registry is underutilized and under-representative of racial and ethnic minorities. African-Americans and Hispanics are somewhat under-represented within the total number of donors, and it is estimated that the Registry is used by only approximately one-third of patients needing transplants. The NMDP has instituted programmes that address such concerns, resulting in an increase in both the total number of donors and the minority representation on the Registry. It has also increased efforts to recruit donors of umbilical cord blood, often a viable alternative source of haematopoietic stem cells. Over the past 8 years, the Registry has grown by more than 30% to contain over seven million donors, and the proportional distribution of racial and ethnic groups on the Registry has steadily approached their proportional distribution in the US population. Continued efforts on the part of the NMDP to maintain a Registry that is large in number and ethnically diverse should help ensure access to haematopoietic stem cell transplants for all patients who need them. The procedures and experience of the NMDP and its Registry may have implications for registries elsewhere in the world as they confront similar issues of number and diversity.