The role of registries in facilitating clinical research in BMT: examples from the Center for International Blood and Marrow Transplant Research

Abstract

Observational databases, such as those maintained by the Center for International Blood and Marrow Transplant Research (CIBMTR) and the European Blood and Marrow Transplant Group (EBMT), play an important role in facilitating research into hematopoietic SCT (HCT) outcomes. The CIBMTR maintains a large database of the outcome of BMTs performed in 450 centers in 47 countries, including information on 240,000 transplant recipients and adding information on about 14,000 new transplants per year. The database has data for 9000 survivors followed for 10 or more years. The database may facilitate the understanding of outcomes by addressing questions difficult to answer through clinical trials. Clinical databases may also aid the development of optimal designs for prospective clinical trials. Use of the CIBMTR database for trial design and monitoring is an integral part of the US Blood and Marrow Transplant Clinical Trials Network (BMT CTN). The establishment of international outcomes registries was an important component of advances in HCT over the past three decades. Future progress will be further enhanced by inter-registry collaboration through the Worldwide Blood and Marrow Transplant Group (WBMT).