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Volumn 18, Issue 1, 2015, Pages 20-25

National registries of rare diseases in europe: An overview of the current situation and experiences

Author keywords

Epidemiology; EPIRARE; Public health; Rare diseases; Registries

Indexed keywords

ARTICLE; COMMON DATA ELEMENTS; DISEASE REGISTRY; EUROPE; HEALTH CARE PLANNING; HEALTH CARE POLICY; HUMAN; INTERNATIONAL COOPERATION; PRIORITY JOURNAL; RARE DISEASE; EUROPEAN UNION; FACTUAL DATABASE; HEALTH CARE DELIVERY; ORGANIZATION; ORGANIZATION AND MANAGEMENT; PROCEDURES; RARE DISEASES; REGISTER; STANDARDS; STATISTICS AND NUMERICAL DATA;

EID: 84920681648     PISSN: 16624246     EISSN: 16628063     Source Type: Journal    
DOI: 10.1159/000365897     Document Type: Article
Times cited : (38)

References (13)
  • 5
    • 84920678798 scopus 로고    scopus 로고
    • Council Recommendation of 8 June 2009 on an action in the field of rare diseases
    • Council Recommendation of 8 June 2009 on an action in the field of rare diseases. Official Journal of the European Union (2009/C 151/02). http://eur-lex.europa.eu/LexUri Serv/LexUriServ.do?uri=OJ:C:2009:151: 0007: 0010:EN:PDF.
    • Official Journal of the European Union (2009/C 151/02)
  • 6
    • 84920701368 scopus 로고    scopus 로고
    • The Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on cross-border healthcare
    • The Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on cross-border healthcare. http://europa. eu/legislation-summaries/employment- and-social-policy/social-protection/ sp0002-en.htm.
  • 11
    • 84920643903 scopus 로고    scopus 로고
    • A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research
    • press
    • Choquet R, Maaroufi M, de Carrara A, Messiaen C, Luigi E, Landais P: A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research. J Am Med Inform Assoc, in press.
    • J Am Med Inform Assoc
    • Choquet, R.1    Maaroufi, M.2    De Carrara, A.3    Messiaen, C.4    Luigi, E.5    Landais, P.6
  • 13
    • 84920683944 scopus 로고    scopus 로고
    • Proposal for a Regulation of the European Parliament and of the Council on the protection of individuals with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation)
    • Proposal for a Regulation of the European Parliament and of the Council on the protection of individuals with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation). 2012. http://ec.europa.eu/justice/ data-protection/document/review2012/ com-2012-11-en.pdf.
    • (2012)


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.