The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration

Archives of Public Health

Volumn 72, Issue 1, 2014, Pages

  Taruscio, Domenica ^a   Mollo, Emanuela ^a   Gainotti, Sabina ^a   de la Paz, Manuel Posada ^b,c   Bianchi, Fabrizio ^d   Vittozzi, Luciano ^a  

^a ISTITUTO SUPERIORE DI SANITÀ   (Italy)

^b Instituto de Salud Carlos III   (Spain)

^c CENTRO DE INVESTIGACIÓN BIOMÉDICA EN RED DE ENFERMEDADES RARAS CIBERER   (Spain)

^d INSTITUTE OF CLINICAL PHYSIOLOGY   (Italy)

Author keywords

Common data elements; EPIRARE; European platform; Patient registration; Rare diseases; Registries

Indexed keywords

EID: 84988861990     PISSN: 07787367     EISSN: 20493258     Source Type: Journal    
DOI: 10.1186/2049-3258-72-35     Document Type: Article

References (12)

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