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CHAPTER 2 International Blood and Marrow Registries: trends on long‐term data collection
Rachel Phelan1, Jakob R. Passweg2, Helen Baldomero2, Minako Iida3, Yoshiko Atsuta4, Shinichiro Okamoto5, Mahmoud Aljurf6, Feras Alfraih6, and Bronwen E. Shaw1
1 Center for International Blood and Marrow Transplant Research; Department of Medicine, Medical College of Wisconsin, Milwaukee, WI, USA
2 Division of Hematology, University Hospital Basel, Basel, Switzerland
3 Department of Promotion for Blood and Marrow Transplantation, Aichi Medical University School of Medicine, Nagakute, Japan
4 Japanese Data Center for Hematopoietic Cell Transplantation (JDCHCT), Nagoya, Japan
5 Division of Hematology, Department of Medicine, Keio University School of Medicine, Tokyo, Japan
6 Oncology Center, King Faisal Specialist Hospital & Research Center, Riyadh, Saudi Arabia
Overview of the Role of Registries in HCT
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.).
Overview of Late Effects Data Collection through Registries
Registry Strengths
With a growing population of survivors following HCT, the importance of registry‐based studies focused on this patient population has become increasingly apparent. Research focused on long‐term HCT survivors is complex due to several factors, including the fact that certain HCT‐specific late effects may be rare, have long latencies, or occur more frequently in certain patient populations.
In order to overcome these research barriers, centralized and standardized data collection of large numbers of patients over extended periods of time is required. Recent studies evaluating risk factors for secondary neoplasms (SN), including central nervous system (CNS) tumor development in survivors of pediatric HCT and acute myeloid leukemia/myelodysplastic syndrome in survivors of autologous HCT, are examples of the critical importance of registry data to explore rare events that occur many years following the HCT process itself [13,'4]. The study focused on CNS tumor development found the cumulative