Data Access Committee (DAC)

The Data Access Committee (DAC) is responsible for reviewing every new user who requests access to the RD-Connect Genome-Phenome Analysis Platform. This review process aims to ensure that only verified researchers and clinicians with a genuine interest in rare disease research are authorised to access the data stored in the Platform.

DAC has been formed with three main purposes:

1. To review all requests for user accounts for the GPAP and to rule on circumstances where a user’s access may be revoked for lack of adherence to the Code of Conduct or other breach of best practice.

2. To review all requests for exceptions to the default embargo periods, in line with GPAP standard procedures for embargo and availability of data.

3. To review requests for access to data outside the access provided through the GPAP interface, including access to raw data submitted to the RD-Connect European Genome Archive and access to aggregated data that may be requested for specific research purposes from time to time.

Members of DAC

Position: Research Infrastructure Project Manager
Organisation: EURORDIS – Rare Diseases Europe
Area of work: Patient engagement

Position: Director of CNAG
Organisation: Centro Nacional de Análisis Genómico
Area of work: Genomics Platform, Management

Position: Senior Scientist, CHEO Research Institute. Professor of Neurology, The Ottawa Hospital and University of Ottawa Faculty of Medicine
Organisation: Centro Nacional de Análisis Genómico
Area of work: Management

Position: Head of Research Impact and Strategic Analysis at Fondazione Telethon
Organisation: Fondazione Telethon
Area of work: Biobanks