Data Access Committee

The RADeep Data Access Committee has been established in order to review the content of the requests for accessing RADeep data coming from third parties (other researchers from both public and private institutions, patients associations...).

The Data Access Committee is formed by:

• The Steering Committee of RADeep (RADeep's Coordinators / Eduard J. van Beers, Haematologist / Raffaella Colombatti, Paediatrician / Paola Bianchi, Lab specialist / Dore Peereboom and Loris Brunetta, Patients' representatives)
• An ethical expert, Alexis Rodriguez Gallego
• A Biostatistician, Sara Reidel
• Data providers at national / local level who are in direct or indirect link with patients and provide data to RADeep.

Members of the Data Access Committee for RADeep, the European Registry for Rare Anemias Disorders, started the year with an online meeting on Wednesday 10th of January.

It was the opportunity to kick-off the year with an update on the achievements of 2023. RADeep is proud to count collaborators from 13 countries (BE, CY, DK, DE, ES, GR, FR, IT, IR, PT, SE, NL, NO); of which seven have completed all the legal steps for the sharing of patient level data (BE, CY, DK, ES, GR, IT & NL). As per 10/01, patients from 5 countries (BE, DK, ES, GR & IT) were enrolled in the registry, diagnosed with Sickle Cell Disease (SCD), thalassemia (THAL) and with other rare anaemia disorders (RADs).

Over the next few months, RADeep is expecting to collect more data. The registry aims to map at the European level the diagnostic methods, demography, survival rate, main clinical features and treatments of RADs patients. In the future, the collected data help at providing better care to patients affected by these rare diseases. The registry stores patients' data in a secure way, in line with the General Data Protection Regulation (GDPR).

The members were also able to discuss RADeep's next publication on the overall project, foreseen to be published in an open-source journal during the first trimester of 2024.

DAC members will meet again in March and every two months until the end of 2024.

You can also find the Data Access Policy and the Publications and Authorship Policy on our website in the section ‘Policies’.