GenoMed4All's links to ENROL and RADeep registries highlighted at their last Data Access Committee

Our colleague María del Mar Mañú Pereira, Scientific Director at ERN-EuroBloodNet and coordinator of the ENROL registry (European Rare Blood Disorders Platform) lead a session on “Sickle Cell Disease: RADeep, GenoMed4All, SYNTHEMA & ERDERA” during the latest ENROL Data Access Committee (DAC) meeting hosted at Vall d’Hebron Research Hospital.

The ENROL DAC is formed by the ENROL Steering Committee, legal and ethical experts and subgroups for domain disease experts, and has the overall aim to promote the re-use of the data collected in ENROL while ensuring protection of data subjects. The DAC has the responsibility to approve ENROL’s Data Access Policy and ensure the good use of assets, checking that the applicant and proposed work complies with the ENROL Policy and requirements in confidentiality, providing feedback to applicants advising on the improvements required for their requests if needed, evaluating application forms from data users and approving aggregated figures to be publicly published by ENROL.