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: 

  • 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
  • Hôpital ERASME (ERASME), Brussels, Belgium. PI: Béatrice Gulbis
  • Cyprus Institute of Neurology and Genetics (CING), Nicosia, Cyprus. PI: Petros Kountouris

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

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

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
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
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
Eduard van Beers University Medical Center Utrecht The Netherlands
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

Euro Blood Net