European Rare Blood Disorders Platform (ENROL) Data Access Committee meeting was held 25th September 2024 in Barcelona

The meeting was held in Vall d'Hebron University Hospital (Barcelona) with 19 participants and with relevant outcomes for the strategy of ENROL data gathering and analysis

The European Rare Blood Disorders Platform (ENROL) Data Access Committee meeting was held 25th September 2024 in Vall d'Hebron University Hospital (Barcelona), with 19 participants from 6 Member states. 

The first block of the meeting was focused on the EU Health Data Space Regulation, with a dedicated session introducing the key aspects of the new Regulation approved in March 2024.

The overall strategy and state of the art for the implementation of ERNs registries was presented in the second session, In line with the European Rare dIsease research Coordination and support Action (ERICA), the European Joint Programme on Rare Diseases (EJP-RD), and now also through the EU RD research Alliance (ERDERA).

ENROL directly has positioned itself as a key player for data driven research in synergies with collaborative EU funded projects, including the following showcases presented on von Willebrand Disease, Acute Myeloid Leukemia, Myelodysplastic Syndromes, Sickle Cell Disease, and Blastic Plasmacytoid Dendritic Cell Neoplasm.

ENROL strategy for data gathering and update of dataset was also discussed in the last session of the meeting, reaching final agreements relevant for the upcoming data gathering and analysis. 

Thanks to all the participants for your contributions!