A model for the European platform for rare disease registries

Public Health Genomics

Volumn 16, Issue 6, 2013, Pages 299-304

  Vittozzi, L ^a   Gainotti, S ^a   Mollo, E ^a   Donati, C ^a   Taruscio, D ^a  

^a ISTITUTO SUPERIORE DI SANITÀ   (Italy)

Author keywords

Platform; Rare diseases; Registries

Indexed keywords

ARTICLE; COMMON DATA ELEMENTS; CONSULTATION; ELECTRONIC MEDICAL RECORD; EUROPEAN UNION; HEALTH SERVICE; HUMAN; INFORMATION PROCESSING; NATIONAL HEALTH SERVICE; PRIORITY JOURNAL; RARE DISEASE; REGISTER; REGISTRATION; TELEHEALTH; DISEASE MANAGEMENT; EUROPE; FACTUAL DATABASE; INTERNET; NONBIOLOGICAL MODEL; STANDARD;

DATABASES, FACTUAL; DISEASE MANAGEMENT; EUROPE; HUMANS; INTERNET; MODELS, ORGANIZATIONAL; RARE DISEASES; REGISTRIES;

EID: 84899906316     PISSN: 16624246     EISSN: 16628063     Source Type: Journal    
DOI: 10.1159/000355935     Document Type: Article

References (8)

1. Commission of the European Communities: Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on Rare Diseases: Europe's challenges. 2008. http://ec.europa. eu/health/ph-threats/non-com/docs/ rare-com-en.pdf.
2. EU 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://eurlex.europa.eu/LexUriServ/ LexUriServ.do?uri=OJ:C:2009:151:0007: 0010 :EN:PDF.
3. Rubinstein YR, Groft SC, Bartek R, Brown K, Christensen RA, Collier E, Farber A, Farmer J, Ferguson JH, Forrest CB, Lockhart NC, Mc-Curdy KR, Moore H, Pollen GB, Richesson R, Miller VR, Hull S, Vaught J: Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB). Contemp Clin Trials 2010; 31: 394-404.
4. EPIRARE: 'Building Consensus and Synergies for the EU Registration of RD Patients'. http://www.epirare.eu.
5. European Commission: Supporting rare diseases registries and providing a European Platform for rare diseases registration http://ec.europa. eu/health/rare-diseases/policy/registries/ index-en.htm (accessed June 18, 2013).
6. 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.
7. 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.
8. EUCERD core recommendations on RD patient registration and data collection to the European Commission, Member States and all stakeholders. http://www.eucerd.eu/wpcontent/ uploads/2013/06/EUCERD-Recommendations-RDRegistryDataCollection-adopted. pdf (accessed July 10, 2013).