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Half a Score: A video from EPIRARE about rare diseases

Registry initiatives on rare diseases are urgent

February 6, 2014

EPIRARE

EPIRARE (European Platform for Rare Disease Registries) is a project co-funded by the European Commission. It encourages the adoption of the EU Council Recommendation on rare diseases (2009/872/CE), which recommends support of registers and databases for epidemiolocial purpose. ENERCA is working in a e-Registry tool in line with the objectives of EPIRARE. The following video has been produced by EPIRARE, together with the Italian Centro Nazionale Malattie Rare (CNMR), to explain the urgency of building new registry initiatives in rare diseases.

 

EPIRARE project started back in 2011with a three year funding from the EC. Its main objectives are:

  • Define the needs of the EU registries and databases on rare diseases
  • Identify key issues to prepare a legal basis
  • Agree on a Common data set and elaborate procedures for quality control
  • Agree on the Register and Platform Scope, Governance and long-term sustainability

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