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Table 3 Key facts and state of play in December 2013: Rare disease patient registration and data collection

From: The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community

Around 640 rare disease registries in Europe1
Majority of registries are academic
Some RD have more than one registry, many RD have no registry
EUCERD Core Recommendations on Rare Disease Patient Registration and Data Collection adopted on 5 June 2013
Consensus on 6 main areas : international operability, sources of data, collection of data, good practices, use of data for regulatory purposes, and sustainability
  1. 1 Data as of December 2013 from Orphanet [http://www.orpha.net] concerning European Member States and surrounding European countries in the Orphanet Consortium.