Published in:
Open Access
01-11-2012 | Meeting abstract
EPIRARE survey on activities and needs of rare disease registries in the European Union
Authors:
Domenica Taruscio, Sabina Gainotti, Luciano Vittozzi, Fabrizio Bianchi, Monica Ensini, Manuel Posada
Published in:
Orphanet Journal of Rare Diseases
|
Special Issue 2/2012
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Excerpt
The EPIRARE project[
1] aims to build consensus and synergies for the development of an EU platform for rare disease registries and to address relevant regulatory, ethical and technical issues associated with the registration of rare disease patients. To this aim, a survey was carried out among existing rare disease registries and databases to get information on their objectives, needs, governance mechanisms, sustainability, and measures for the compliance with regulatory and ethical requirements and for quality assurance, as well as expectations from and opinions on a registry platform. Responses were received from 255 registries, of which 220 active registries were selected based on the completeness of the response. …
