[Guidelines for the essential data entry in the European Bone Marrow Transplant Registry].

Abstract

The new registry of the European Society for Blood and Marrow Transplantation (EBMT) facilitates the collection of data from patients undergoing cellular therapy. The growing complexity of hematological diseases and their treatments have led to an exponential increase in data, resulting in challenges and heterogeneity in data entry. The objective of this workshop is to develop recommendations aimed at harmonizing data entry across all centers. The principal challenges related to data collection were identified within French-speaking centers and subsequently discussed. In accordance on the guidelines of the EBMT, we reviewed the data entry forms and selected representative disease pathologies (acute leukemias, myelodysplastic syndromes, myeloproliferative syndromes, overlap syndromes, and aplastic anemias). Four working groups were established, focusing respectively on diagnostics, transplant status, allogeneic transplantation, and follow-up at day 100 and annually. The entry of essential variables was delineated within the Core Dataset. Certain non-mandatory variables in the registry (Extended Dataset) are, however, indispensable for the conduct of future retrospective studies. The workshop highlighted the need for stronger collaboration between physicians, cytogeneticists, biologists, and data managers in order to better identify, define, and standardize the data to be collected. We emphasize that working tools are available within the guidelines. This workshop has highlighted several outstanding issues to be forwarded to the registry coordinators, as well as the need for practical training of data managers, complementing the existing e-learning modules.