The French national registry for rare diseases: An integrated model from care to epidemiology and research

Orphanet Journal of Rare Diseases

Volumn 9, Issue 1, 2014, Pages

  Choquet, Rémy ^a,b   Landais, Paul ^a,c  

^a HÔPITAL NECKER ENFANTS MALADES   (France)

^b INSERM   (France)

^c UNIV MONTPELLIER   (France)

Author keywords

[No Author keywords available]

Indexed keywords

CONCEPTUAL FRAMEWORK; CONFERENCE PAPER; DATA PROCESSING; ELECTRONIC HEALTH RECORD; FRANCE; HOSPITAL INFORMATION SYSTEM; HUMAN; INFORMATION PROCESSING; PATIENT IDENTIFICATION; RARE DISEASE; REGISTER;

EID: 84928728883     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/1750-1172-9-S1-O7     Document Type: Conference Paper

References (6)

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2. Coorevits P, Sundgren M, Klein G O, Bahr a, Claerhout B, Daniel C, Dugas M, Dupont D, Schmidt a, Singleton P, De Moor G, Kalra D: "Electronic health records: new opportunities for clinical research.,". J. Intern. Med 2013,274(6):547-60. 10.1111/joim.12119
3. Atreya RV, Smith JC, McCoy AB, Malin B, Miller RA: "Reducing patient re-identification risk for laboratory results within research datasets,". J Am Med Inf. Assoc 2013,20(1):95-101. 10.1136/amiajnl-2012-001026
4. Choquet R, Qouiyd S, Ouagne D, Pasche E, Daniel C, Boussaïd O, Jaulent M-C: "The Information Quality Triangle: a methodology to assess clinical information quality.,". Stud. Health Technol. Inform 2010, 160:699-703.
5. Hripcsak G, Albers DJ: "Next-generation phenotyping of electronic health records,". J Am Med Inf. Assoc 2013,20(1):117-121. 10.1136/amiajnl-2012-001145
6. Choquet R, Fonjallaz Y, De Carrara A, Maaroufi M, Vandenbussche P, Dhombres F, Landais P: "Coding rare diseases in health information systems?: a tool for visualizing classifications and integrating phenotypic and genetic data,". Journées Francofones de l'Informatique Médicale (JFIM) 2014.