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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

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Around 640 rare disease registries in Europe1

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Majority of registries are academic

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Some RD have more than one registry, many RD have no registry

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EUCERD Core Recommendations on Rare Disease Patient Registration and Data Collection adopted on 5 June 2013

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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.
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172