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Late effects specific data collection

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The Transplant Complications Working Party (TCWP) leads efforts focused on complications and long‐term survivorship. The aim of the Transplant Complications Working Party is to conduct research as well as to provide education and expertise on the subject of non‐infectious complications after HCT. The major fields of interest of the TCWP include the following:

Early complications e.g. graft failure, VOD/SOS, transplant‐associated microangiopathy (TAM), other endothelial syndromes, impact of co‐morbidities, toxicity of conditioning regimen and supportive care; Acute and cGVHD – all aspects from risk factors through diagnosis to treatment; Late effects – e.g. infertility, sexual dysfunction, secondary cancers, organ‐specific late complications, quality of life. Variables on late effects such as fertility and secondary cancers are collected in the MED‐B forms, while the MED‐A form contains a restricted set of variables. Cause of death is obviously recorded for every patients.

Issues of long‐term survivorship data collection are many. Obviously data quality depends on the quality of education for data managers, a task taken seriously by the EBMT where data managers take part at annual education conferences to facilitate quality collection. Follow‐up at each center also poses a challenge, especially in a continent with many different countries and types of healthcare systems.

Blood and Marrow Transplantation Long Term Management

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