Data Access Committee
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:
| Country | Member | Institution | Role |
|---|---|---|---|
| Spain | María del Mar Mañú Pereira | University Hospital Vall d'Hebron - Vall d'Hebron Research Institute, Barcelona. | Steering Committee member - Coordinator |
| Belgium | Béatrice Gulbis | Hôpital Erasme - Cliniques Universitaires de Bruxelles, Brussels. | Steering Committee member - Co-coordinator and Data provider substitute |
| Cyprus | Petros Kountouris | Cyprus Institute of Neurology and Genetics, Nicosia. | Steering Committee member - Co-coordinator |
| Spain | Anna Collado Gimbert | University Hospital Vall d'Hebron - Vall d'Hebron Research Institute, Barcelona. | Steering Committee member - Clinical Researcher |
| Spain | Sara Reidel | University Hospital Vall d'Hebron - Vall d'Hebron Research Institute, Barcelona. | Steering Committee member - Biostatistician and Data manager |
| Cyprus | Stella Tamana | Cyprus Institute of Neurology and Genetics, Nicosia. | Steering Committee member - Platform manager |
| Italy | Raffaella Colombatti | Azienda Ospedaliera di Padova, Padova. | Steering Committee member - Paediatrician |
| The Netherlands | Eduard van Beers | University Medical Center Utrecht, Utrecht. | Steering Committee member - Haematologist |
| Italy | Paola Bianchi | Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan. | Steering Committee member - Laboratory specialist |
| Italy | Loris Brunetta | Associazione Ligure Thalassemici Onlus. | Steering Committee member - Patients' representative |
| The Netherlands | Dore Peereboom | Stichting Zeldzame Bloedziekten. | Steering Committee member - Patients' representative |
| Belgium | Laurence Dedeken | Hôpital Universitaire des Enfants Reine Fabiola (HUDERF), Brussels. | Data Provider - Representative |
| Cyprus | Soteroula Christou | Archbishop Makarios III Hospital, Nicosia. | Data Provider - Representative |
| Cyprus | Iren Savvides | Archbishop Makarios III Hospital, Nicosia. | Data Provider - Substitute |
| Denmark | Andreas Glenthøj | Rigshospitalet, Copenhagen. | Data Provider - Representative |
| Denmark | Marianne Hoffmann | Rigshospitalet, Copenhagen. | Data Provider - Substitute |
| France | Frédéric Galactéros | Assistance Publique - Hôpitaux de Paris - Hôpital Henri Mondor, Paris. | Data Provider - Representative |
| France | Pablo Bartolucci | Assistance Publique - Hôpitaux de Paris - Hôpital Henri Mondor, Paris. | Data Provider - Substitute |
| Germany | Joachim Kunz | Heidelberg University, Heidelberg. | Data Provider - Representative |
| Germany | Andreas Kulozik | Heidelberg University, Heidelberg. | Data Provider - Substitute |
| Greece | Antonis Kattamis | University of Athens - Aghia Sophia Children's Hospital, Athens. | Data Provider - Representative |
| Greece | Ilona Binenbaum | University of Athens - Aghia Sophia Children's Hospital, Athens. | Data Provider - Substitute |
| Italy | Giovanna Russo | Azienda Ospedaliero Universitaria Policlinico "Rodolico-San Marco", Catania. | Data Provider - Representative |
| Italy | Daniela Cuzzubbo | Ospedale Pediatrico Meyer Firenze. | Data Provider - Substitute |
| Portugal | Celeste Bento | Centro Hospitalar e Universitário de Coimbra, Coimbra. | Data Provider - Representative |
| Portugal | Paula Kjollerstrom | Hospital Dona Estefania. | Data Provider - Substitute |
| Spain | Elena Cela de Julián | Hospital Gregorio Marañón, Madrid. | Data Provider - Representative |
| Spain | José Manuel Marco | Hospital Gregorio Marañón, Madrid. | Data Provider - Substitute |
| Sweden | Ulf Tedgard | Skåne University Hospital, Lund. | Data Provider - Representative |
| Sweden | Annika Martensson | Skåne University Hospital, Lund. | Data Provider - Substitute |
| The Netherlands | Karin Fijnvandraat | Amsterdam UMC. | Data Provider - Representative |
| The Netherlands | Bart Biemond | Amsterdam UMC. | Data Provider - Substitute |
| Spain | Maria Pilar Nicolas | Facultad de Derecho/Zuzenbideko Fakultatea/Faculty of Law, UPV/EHU | Legal expert |
| Spain | Iñigo de Miguel Beriain | Facultad de Derecho/Zuzenbideko Fakultatea/Faculty of Law, UPV/EHU | Legal expert |
| Spain | Alexis Rodriguez Gallego | Vall d'Hebron Research Institute, Barcelona. | Ethical expert |
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 second semester 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’.
