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Duration: 16 April 2011 – 16 April 2014
EC Contribution: € 661 402,00
Website: EPIRARE

General objectives:

  • to build consensus and synergies to address regulatory, ethical and technical issues associated with the registration of RD patients and to elaborate possible policy scenarios
  • creation of a EU platform for the collection of data on RD patients and their communication among qualified users, based on a feasibility study
  • define the options for the preparation of a legal basis, the possible scopes to achieve most effective synergies, the corresponding governance framework and possible options for sustainability. The feasibility of registration of a minimum data set common to all rare diseases, designed to inform policy-making, the conditions to admit research-driven disease or treatment-specific modules and the ways to ensure a sustainable data flow will be assessed

Coordinator: Istituto Superiore di Sanità

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