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Overview of the Role of Registries in HCT

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Registries focused on data collection specific to hematopoietic cell transplant (HCT) recipients have been in place since the late 1960s. These databases are instrumental in research efforts to understand outcomes over time for those receiving an HCT [1,2]. They allow analyses based on pre‐ and posttransplant variables, including histocompatibility, choice of conditioning regimen, donor sources, disease type and the development of transplant‐related complications. These databases have been used in a multitude of published retrospective studies, which have informed clinical practice over the years [3–12]. Registry data has helped to inform numerous prospective clinical trials in efforts to improve upon prior outcomes such as overall survival and the development of graft‐vs‐host‐disease (GVHD) and has also been used as a tool for developing prospective clinical trials by providing insight into areas of research need or estimates for potential patient accrual. The Blood and Marrow Transplant Clinical Trials Network (BMT CTN), in collaboration with a well‐established registry, the Center for International Blood and Marrow Transplant Research (CIBMTR), is an example of how ongoing input of registry data can be utilized for this purpose. It is also notable that some registry data is linked to biorepositories, presenting the opportunity for studies focused on issues such as immune reconstitution or genetic predisposition to certain transplant‐related complications or disease relapse.

Globally, HCT‐specific registries have continued to expand both in number and depth of data collection, and include the CIBMTR, the European Society for Blood and Marrow Transplantation (EBMT), the Asia‐Pacific Blood and Marrow Transplantation Group (APBMT) and the Eastern Mediterranean Blood and Marrow Transplantation Registry (EMBMT) (Table 2.1.).

Blood and Marrow Transplantation Long Term Management

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