Читать книгу Blood and Marrow Transplantation Long Term Management - Группа авторов - Страница 23

Though data collection through registries can address several of the issues surrounding late effects research, there remain many challenges. The correct methodology to conduct such research often requires intensive protocol development and complex statistical approaches. A recent report by the National Institutes of Health (NIH) Hematopoietic Cell Transplantation Late Effects Initiative highlights the importance of collecting the correct amount and type of data, thoughtfully approaching study design, and having the expertise to conduct the analysis [15]. In order to collect registry data and conduct appropriate studies, significant infrastructure and funding is required. When collecting and evaluating data internationally, cultural/language difference, regulation variances around data collection, variability in organizational structure, and resource barriers need to be considered. One of the most notable challenges, regardless of geographic location, is that of patient attrition as they get further from the acute post‐HCT period and may be less likely to be followed by the transplant center.