The overall governance of RADeep is undertaken by a Consortium formed by the Institutions of the Principal Investigators (PIs) of the platform:
This consortium is RADeep's decision-making body regarding the following functions:
The Consortium is in charge of overall governance and global strategy of RADeep. A Consortium Agreement defines respective roles, rights and relations among parties forming the Consortium as well as their equal responsibilities on data protection in terms of GDPR based on the Joint Controllership of data.
RADeep Steering Committee is composed by the coordinators, one hematologist, one pediatrician, one laboratory specialist and two patients' representatives. RADeep Steering Committee is in charge of the common and transversal tasks for RADeep coordination and implementation of the different disease specific arms. Steering committee is in charge of defining RADeep's Study protocol including the establishment of the common data elements for rare anaemia disorders (CDE-RAD).
Co-Principal Investigators | Institution | Country |
---|---|---|
María del Mar Mañú Pereira | Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH) | Spain |
Béatrice Gulbis | Hôpital ERASME (ERASME) | Belgium |
Petros Kountouris | Cyprus Institute of Neurology and Genetics (CING) | Cyprus |
Biostatistician | ||
Sara Reidel | Vall d’Hebron Research Institute – University Hospital Vall d’Hebrón | Spain |
Platform manager | ||
Stella Tamana | Cyprus Institute of Neurology and Genetics (CING) | Cyprus |
Hematologist | ||
Eduard van Beers | University Medical Center Utrecht | The Netherlands |
Pediatrician | ||
Raffaella Colombatti | Azienda Ospedaliera di Padova | Italy |
Laboratory specialist | ||
Paola Bianchi | Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico | Italy |
Patients representatives | Association | Country |
Loris Brunetta | Associazione Ligure Thalassemici Onlus | Italy |
Dore Peereboom | Stichting Zeldzame Bloedziekten | The Netherlands |