A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research

Journal of the American Medical Informatics Association

Volumn 22, Issue 1, 2015, Pages 76-85

  Choquet, Rémy ^a,b   Maaroufi, Meriem ^a,b   De Carrara, Albane ^a   Messiaen, Claude ^a   Luigi, Emmanuel ^c   Landais, Paul ^a,d  

^a HÔPITAL NECKER ENFANTS MALADES   (France)

^b INSERM   (France)

^c Direction Générale de l'Offre de Soins Ministère de la Santé et de la Solidarité ^*  (France)

^d UNIV MONTPELLIER   (France)

Author keywords

Common data elements; Interoperability; Metadata; Minimum data set; National health program; Rare diseases

Indexed keywords

ARTICLE; DISEASE ONTOLOGY; ELECTRONIC MEDICAL RECORD; FAMILY HISTORY; FRANCE; HEALTH PROGRAM; HUMAN; MEDICAL HISTORY; METHODOLOGY; QUESTIONNAIRE; RARE DISEASE; SAMPLE SIZE; COMMON DATA ELEMENTS; INFORMATION PROCESSING; MEDICAL RESEARCH; PROCEDURES; STANDARDS; SYSTEM ANALYSIS;

BIOMEDICAL RESEARCH; COMMON DATA ELEMENTS; DATA COLLECTION; DATASETS AS TOPIC; FRANCE; HUMANS; RARE DISEASES; SYSTEMS INTEGRATION;

EID: 84929511521     PISSN: 10675027     EISSN: 1527974X     Source Type: Journal    
DOI: 10.1136/amiajnl-2014-002794     Document Type: Article

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