Coordination & Steering Committe

Coordination & Steering Committee

Coordinating Consortium

The overall governance of RADeep is undertaken by a Consortium formed by the Institutions of the Principal Investigators (PIs) of the platform: 

  • Hôpital ERASME (ERASME), Brussels, Belgium. PI: Béatrice Gulbis
  • Cyprus Institute of Neurology and Genetics (CING), Nicosia, Cyprus. PI: Marina Kleanthous
  • Vall d'hebron Research Institute - Vall d'Hebron Research Institute - University Hospital Vall d'Hebrón (VHIR/HUVH), Barcelona, Spain. PI: Maria del Mar Mañú Pereira

This consortium is RADeep's decision-making body regarding the following functions:

  • To define RADeep's global strategy
  • To define RADeep's Policy ensuring General Data Protection Regulation (GDPR) compliance
  • To negotiate financial agreements with sponsors
  • To develop the IT solution with adequate safeguards for secure data exchanging

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

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).

Steering committee

Co-Principal Investigators Institution Country
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
Hematologist    
Eduard van Beers University Medical Center Utrecht 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 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. 

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