Ongoing research is focused on better understanding of late effect issues and predictionof posttransplant long‐term complications, which allows transplant‐eligible patients to incorporate this knowledge into more informative decision making [18,23]. Therefore, significant resources should be focused on the better implementation of how patients and physicians use extensive data regarding posttransplant late complications in clinical care.
With survivorship, a shift in care occurs from large transplant centers to community healthcare providers. As a result, many hematologist/oncologist and primary care physicians are assuming the posttransplant care of long‐term survivors. Preventive measures, as well as early detection and treatments, are important aspects to reducing morbidity and mortality in long‐term survivors after HCT. This book [17] offers the updated practical advice and outlines late effect experts’ personal approaches in managing long‐term survivors after HCT. The management of late HCT effects is important to improve long‐term survival of HCT recipients but should be tailored to the risks specific to the primary disease and transplant type. Future planning should account for the impact of the expected increase in transplant activity and number of survivors on resource utilization.
We also recommend early referral or discussion with a transplant center for enrolment of patients in available late effect studies and for management guidelines. A better understanding of the pathogenesis of late effects will allow for more effective screening to identify patients at risk prior to the HCT procedure, and allow more effective monitoring to detect early evolution of the late effects after HCT. This may, in turn, allow for improved therapeutic decision making while evaluating patients for HCT, and early institution of treatments directed at preventing and treating late effects in patients at risk after HCT. To better inform the needs of the contemporary HCT survivor generation and guide the delivery of late effects services, periodic analysis of new survivor cohorts is needed.
Declaration of commercial interest
None.
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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
1Center for International Blood and Marrow Transplant Research; Department of Medicine, Medical College of Wisconsin, Milwaukee, WI, USA
2Division of Hematology, University Hospital Basel, Basel, Switzerland
3Department of Promotion for Blood and Marrow Transplantation, Aichi Medical University School of Medicine, Nagakute, Japan
4Japanese Data Center for Hematopoietic Cell Transplantation (JDCHCT), Nagoya, Japan
5Division of Hematology, Department of Medicine, Keio University School of Medicine, Tokyo, Japan
6Oncology 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.
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