Federating patients identities: The case of rare diseases

Orphanet Journal of Rare Diseases

Volumn 13, Issue 1, 2018, Pages

  Maaroufi, Meriem ^a,b,c   Landais, Paul ^b,d   Messiaen, Claude ^a   Jaulent, Marie Christine ^b,c   Choquet, Rémy ^a,b,c  

^a HÔPITAL NECKER ENFANTS MALADES   (France)

^b SORBONNE UNIVERSITÉ   (France)

^c UNIVERSITÉ PARIS 13   (France)

^d UNIVERSITÉ DE MONTPELLIER   (France)

Author keywords

Health information exchange; Identity federation; Patient data privacy; Patient identification systems; Rare diseases

Indexed keywords

ACCESS TO INFORMATION; ARTICLE; CLINICAL PRACTICE; DATA ANALYSIS; HUMAN; INFORMATION PROCESSING; MEDICAL INFORMATION SYSTEM; PATIENT INFORMATION; PRACTICE GUIDELINE; RARE DISEASE; RISK REDUCTION; ALGORITHM; FACTUAL DATABASE;

ALGORITHMS; DATABASES, FACTUAL; HUMANS; RARE DISEASES;

EID: 85056319125     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-018-0948-6     Document Type: Article

References (23)

1. Eurordis Position Paper on the WHO Report on Priority Medicines for Europe and the World [Internet]. 2004. Available from: http://www.eurordis.org/fr/publication/world-health-organization-who-report-priority-medicines
2. Van Weely S, Leufkens HGM. Background paper 6.19 rare diseases [internet]. 2004. Available from: http://www.who.int/medicines/areas/priority-medicines/BP6-19Rare.pdf. (Accessed on 11 Oct 2018).
3. Orphanet [Internet]. 2012. Available from: http://www.orpha.net/(accessed. (Accessed on 11 Oct 2018).
4. RARE Diseases. Facts and statistics [internet]: Global Genes. [cited 2015 Oct 26]. Available from: http://globalgenes.org/rare-diseases-facts-statistics/. Accessed on 11 Oct 2018
5. About Rare Diseases [Internet]. http://www.eurordis.org/. [cited 2016 Jan 18]. Available from: http://www.eurordis.org/about-rare-diseases. (Accessed on 11 Oct 2018).
6. Haffner ME, Whitley J, Moses M. Two decades of orphan product development. Nat Rev Drug Discov. 2002;1(10):821-5.
7. 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. 2015;22(1):76-85.
8. Maaroufi M, Choquet R, Landais P, Jaulent M-C. Formalizing mappings to optimize automated schema alignment: application to rare diseases. Stud Health Technol Inform. 2013;205:283-7.
9. Landais P, Messiaen C, Rath A, Le Mignot L, Dufour E, Ben Said M, Jais JP, Toubiana L, Baujat G, Bourdon-Lanoy E, Gérard-Blanluet M, Bodemer C, Salomon R, Aymé S, Le Merrer M, Verloes A. CEMARA task force. CEMARA an information system for rare diseases. Stud Health Technol Inform. 2010;160(Pt 1):481-5.
10. Projet de loi de modernisation de notre système de santé [Internet]. Code de la santé publique, AFSX1418355L Dec 17, 2015. Available from: http://www.legifrance.gouv.fr/affichLoiPreparation.do;jsessionid=F3A3D61446B1F56786C3A823483D2972.tpdila22v-3?idDocument=JORFDOLE000029589477&type=contenu&id=2&typeLoi=proj&legislature=14. (Accessed on 11 Oct 2018).
11. Gilbert H, Handschuh H. Security analysis of SHA-256 and sisters. In: Matsui M, Zuccherato RJ, editors. Selected areas in cryptography [internet]. Springer Berlin Heidelberg; 2003 [cited 2016 Jan 13]. p. 175-193. (Lecture Notes in Computer Science). Available from: http://link.springer.com/chapter/10.1007/978-3-540-24654-1-13. (Accessed on Oct 11, 2018).
12. Dang QH. Secure hash standard [internet]. National Institute of Standards and Technology; 2015 Jul [cited 2016 Feb 1]. Report No.: NIST FIPS 180-184. Available from: http://nvlpubs.nist.gov/nistpubs/FIPS/NIST.FIPS.180-4.pdf. (Accessed on 11 Oct 2018).
13. Référentiel Général de Sécurité version 2.0 - Annexe B1 Mécanismes cryptographiques Règles et recommandations concernant le choix et le dimensionnement des mécanismes cryptographiques. ANSSI; 2014 Feb.
14. RD-Action WP5 survey Deliverable 5.1 - part 1: Review existing technical implementations for RD coding [Internet]. 2016 [cited 2016 Jan 2]. Available from: http://www.rd-action.eu/wp-content/uploads/2016/01/framework-survey-interpretation.pdf. (Accessed on 11 Oct 2018).
15. RD-Action: Rare Diseases Joint Action [Internet]. [cited 2016 Jan 21]. Available from: http://www.rd-action.eu/. (Accessed on 11 Oct 2018).
16. Ludvigsson JF, Håberg SE, Knudsen GP, Lafolie P, Zoega H, Sarkkola C, von Kraemer S, Weiderpass E, Nørgaard M. Ethical aspects of registry-based research in the Nordic countries. Clin Epidemiol. 2015;7:491-508.
17. Maret-Ouda J, Tao W, Wahlin K, Lagergren J. Nordic registry-based cohort studies: possibilities and pitfalls when combining Nordic registry data. Scand J Public Health. 2017;45(17-suppl):14-9.
18. Thompson R, Johnston L, Taruscio D, Monaco L, Béroud C, Gut IG, et al. RD-Connect: an integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. J Gen Intern Med. 2014;29(S3):780-7.
19. Taruscio D, Mollo E, Gainotti S, Posada de la Paz M, Bianchi F, Vittozzi L. The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration. Arch Public Health. 2014;72(1):35.
20. Johnson SB, Whitney G, McAuliffe M, Wang H, McCreedy E, Rozenblit L, et al. Using global unique identifiers to link autism collections. J Am Med Inform Assoc JAMIA. 2010;17(6):689-95.
21. Kho AN, Cashy JP, Jackson KL, Pah AR, Goel S, Boehnke J, et al. Design and implementation of a privacy preserving electronic health record linkage tool in Chicago. J Am Med Inform Assoc JAMIA. 2015;22(5):1072-80.
22. Nitzlnader M, Schreier G. Patient identity management for secondary use of biomedical research data in a distributed computing environment. Stud Health Technol Inform. 2014;198:211-8.
23. Hansson MG, Lochmüller H, Riess O, Schaefer F, Orth M, Rubinstein Y, Molster C, Dawkins, Taruscio D, posada M, woods S. the risk of re-identification versus the need to identify individuals in rare disease research. Eur J Hum Genet 2016; 24(11):1553-1558.