The current situation and needs of rare disease registries in Europe

Public Health Genomics

Volumn 16, Issue 6, 2013, Pages 288-298

  Taruscio, D ^a   Gainotti, S ^a   Mollo, E ^a   Vittozzi, L ^a   Bianchi, F ^b,c   Ensini, M ^d   Posada, M ^e,f  

^a ISTITUTO SUPERIORE DI SANITÀ   (Italy)

^b Fondazione Toscana Gabriele Monasterio   (Italy)

^c INSTITUTE OF CLINICAL PHYSIOLOGY   (Italy)

^d Plateforme Maladies Rares   (France)

^e Instituto de Salud Carlos III   (Spain)

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

Author keywords

Communication; Ethics; Governance; Needs; Networking; Quality; Rare diseases; Registries; Survey; Sustainability

Indexed keywords

ARTICLE; DISEASE REGISTRY; EUROPE; EUROPEAN UNION; FINANCIAL MANAGEMENT; GOVERNMENT REGULATION; HEALTH CARE POLICY; HUMAN; INTERPERSONAL COMMUNICATION; MEDICAL INFORMATION; PRIORITY JOURNAL; QUALITY CONTROL; RARE DISEASE; TOTAL QUALITY MANAGEMENT; ETHICS; HEALTH CARE QUALITY; MEDICAL RESEARCH; NEEDS ASSESSMENT; QUESTIONNAIRE; REGISTER;

BIOMEDICAL RESEARCH; EUROPE; HUMANS; NEEDS ASSESSMENT; QUALITY ASSURANCE, HEALTH CARE; QUESTIONNAIRES; RARE DISEASES; REGISTRIES;

EID: 84899932754     PISSN: 16624246     EISSN: 16628063     Source Type: Journal    
DOI: 10.1159/000355934     Document Type: Article

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