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European Rare Blood Disorders Platform (ENROL)

Consortium

Prof. Béatrice Gulbis

Prof. Béatrice Gulbis

Erasme University Hospital (ERASME) / LHUB-ULB

Brussels, Belgium

Prof. Marina Kleanthous

Prof. Marina Kleanthous

The Cyprus Foundation for muscular dystrophy research (CING)

Nicosia, Cyprus

Prof. Pierre Fenaux

Prof. Pierre Fenaux

Assistance Publique - Hopitaux de Paris (AP-HP)

Paris, France

Consortium is the decision making body of ENROL, constituted by the following parties:

  • Vall d'Hebron University Hospital (HUVH) - Vall d'Hebron University Hospital Foundation - Research Institute (VHIR), Spain - Principal Investigator: Maria del Mar Mañú Pereira, Coordinator
  • Hôpital Erasme - Université Libre de Bruxelles (ERASME / LHUB-ULB), Belgium - Principal Investigator: Béatrice Gulbis
  • The Cyprus Foundation for muscular dystrophy research (CING), Cyprus - Principal Investigator: Marina Kleanthous
  • Assistance Publique - Hopitaux de Paris (AP-HP), France - Principal Investigator: Pierre Fenaux

ENROL Consortium main roles are:

  • To define ENROL's global strategy
  • To define ENROL's Policy ensuring General Data Protection Regulation (GDPR) compliance
  • To develop the IT solution with adequate safeguards for secure data exchanging
  • To maintain, develop and assure the quality of the platform
  • To ensure sustainability
  • To encourage and provide support and guidance to those establishing a new registry following ENROL standards
  • To promote both the work and achievements of each Provider of data as well as ENROL itself, including published papers using data from the common database
  • To facilitate the development of research projects between partners of the network

Tasks, roles and responsibilities by each party are defined in the Consortium Agreement intended to establish the commitments to be assumed by the parties in relation to the execution of the ENROL, in particular concerning the organisation of the work between them, the management of ENROL and the rights and obligations of the parties.








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