TY  - GEN
AU  - Taruscio, Domenica
AU  - Mollo, Emanuela
AU  - Gainotti, Sabina
AU  - Posada De la Paz, Manuel
AU  - Bianchi, Fabrizio
AU  - Vittozzi, Luciano
PY  - 2014
DO  - 10.1186/2049-3258-72-35
UR  - http://hdl.handle.net/20.500.12105/4799
AB  - BACKGROUND: The European Union acknowledges the relevance of registries as key instruments for developing rare disease (RD) clinical research, improving patient care and health service (HS) planning and funded the EPIRARE project to improve...
LA  - eng
PB  - BioMed Central (BMC)
KW  - Registries
KW  - Common data elements
KW  - European platform
KW  - Rare diseases
KW  - Patient registration
KW  - EPIRARE
TI  - The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration
TY  - research article
ER  -