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:
VHIR/HUVH is responsible for the scientific protocol of the platform, ERASME is responsible for the medical writing and CING is responsible for the development of the IT platform and processing of data according to the Study protocol. For the porpoises of the GDPR, VHIR/HUVH is designated as the platform controller. An agreement will be signed with CING as processor.
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).
|Béatrice Gulbis||Hôpital ERASME (ERASME)||Belgium|
|Marina Kleanthous||Cyprus Institute of Neurology and Genetics (CING)||Cyprus|
|María del Mar Mañú Pereira||Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH)||Spain|
|Data Management & Statistics|
|Petros Kountouris||Cyprus Institute of Neurology and Genetics (CING)||Cyprus|
|Victoria Gutiérrez Valle||Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH)||Spain|
|Eduard van Beers||University Medical Center Utrecht||Netherlands|
|Raffaella Colombatti||Azienda Ospedaliera di Padova||Italy|
|Paola Bianchi||Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico||Italy|
|Loris Brunetta||Associazione Ligure Thalassemici Onlus||Italy|
|Dore Peerboom||Stichting Zeldzame Bloedziekten||Netherlands|
RADeep Scientific Boards are established for adapting RADeep's Study protocol and expanding the CDE-RAD according to disease specific needs.