Role of the CIBMTR biorepository and registry in precision transplantation research.

Abstract

Observational studies using registry-based data have become indispensable in our management of patients receiving hematopoietic cell transplantation (HCT) or cellular therapies (CT) for hematologic malignancies. These registries support studies that describe the natural history of disease, evaluate clinical effectiveness, or measure safety and quality of patient care. To complement registries, biobanks exist as an essential partner to provide insight on genetic, molecular, and cellular processes. In this review, we discuss and provide examples of several biobank and registry collaborations that have advanced our knowledge in the field of HCT and CT, using the Center for International Blood and Marrow Transplantation Research (CIBMTR) as a highlighted example. The CIBMTR has collected data on over 650,000 patients and has over 60,000 paired donor recipient banked samples available for research. Biospecimens and clinical data from the CIBMTR have led to advancements in our knowledge and care of conditions such as acute myeloid leukemia and myelodysplastic syndrome (MDS), as well as our understanding of the roles of HLA typing and social determinants of health. Despite the utility in advancing research, registries and biobanks do not exist without challenges which are briefly reviewed. Nevertheless, the contributions of these resources in supporting HCT/CT research are noteworthy.