Ethical management in the constitution of a European database for leukodystrophies rare diseases

European Journal of Paediatric Neurology

Volumn 18, Issue 5, 2014, Pages 597-603

  Duchange, Nathalie ^a   Darquy, Sylviane ^a   D'Audiffret, Diane ^a   Callies, Ingrid ^a   Lapointe, Anne Sophie ^a   Loeve, Boris ^a   Boespflug Tanguy, Odile ^b   Moutel, Grégoire ^c  

^a UNIVERSITÉ PARIS DESCARTES   (France)

^b HÔPITAL ROBERT DEBRÉ   (France)

^c Paris Descartes University   (France)

Author keywords

Ethical management; Ethics committee; Health database; Leukodystrophy; Rare disease

Indexed keywords

ARTICLE; DATA BASE; DEVELOPING COUNTRY; FEEDBACK SYSTEM; HEALTH PRACTITIONER; HUMAN; LEUKODYSTROPHY; MEDICAL ETHICS; MEDICAL INFORMATION; MEDICAL RESEARCH; PATIENT CARE; PATIENT PARTICIPATION; PATIENT RIGHT; PRIORITY JOURNAL; RARE DISEASE; RESEARCH ETHICS; BIOETHICS; DISEASE MANAGEMENT; EUROPE; FACTUAL DATABASE; FEMALE; LEUKOENCEPHALOPATHIES; MALE; RARE DISEASES; STATISTICS AND NUMERICAL DATA;

BIOETHICAL ISSUES; DATABASES, FACTUAL; DISEASE MANAGEMENT; ETHICS, RESEARCH; EUROPE; FEMALE; HUMANS; LEUKOENCEPHALOPATHIES; MALE; RARE DISEASES;

EID: 84906936035     PISSN: 10903798     EISSN: 15322130     Source Type: Journal    
DOI: 10.1016/j.ejpn.2014.04.002     Document Type: Article

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