The first Data Access Committee meeting held in Barcelona

What happened on the 10th of November 2022?

Representatives from 10 European Member States (Belgium, Cyprus, Denmark, France, Germany, Greece, Italy, Portugal, Spain and Sweden), all providing data to RADeep, met in Barcelona on the campus of the Vall d'Hebron Hospital for the first Data Access Committee (DAC) meeting of RADeep.

From left to right: Victoria Gutierrez, Petros Kountouris, Ulf Tedgård, Frédéric Galactéros, Ines Labidi, Joachim Kunz (Andreas Kulozik), Celeste Bento, Ilona Binenbaum, Jose Marco, Laurence Dedeken, Eduard J. van Beers, Andreas Glenthøj, Giovanna Russo, Raffaella Colombatti, Dore Peerboom, Béatrice Gulbis, Loris Brunetta, Claire Diot Lefebvre, Elena Cela, Paola Bianchi, Soteroula Christou & Mar Manu Pereira.

What is expected from the DAC?

The RADeep Data Access Committee has been established in order to review the content of the requests for accessing RADeep data coming from third parties (other researchers from both public and private institutions, patients associations...).

It will also review and approve the protocol for data processing by the RADeep Consortium in order to obtain anonymized data for annual publications and for the website.

The Data Access Committee is formed by:

  • The Steering Committee of the RADeep project (RADeep's Coordinators / One haematologist / One paediatrician / One Lab specialist / Patients' representatives)
  • A Legal and ethical expert
  • A Biostatistician
  • Data providers at national / local level who are in direct or indirect link with patients and provide data to RADeep.

In its first meeting, the Data Access Committee agreed on the principles of a Data Access Policy, as well as of a Publication Policy for RADeep.

It was also the occasion for all professionals involved, many of them administering a registry at National level, to get to better know each other, exchange best practices and plan next steps for their participation in RADeep.

The members of the Data Access Committee will meet again in March 2023, virtually, and will discuss the protocol for data processing by the RADeep Consortium for its first publication planned for mid-2023.

Euro Blood Net