The Current Situation and Needs of Rare Disease Registries in Europe (Articolo in rivista)

Type
Label
  • The Current Situation and Needs of Rare Disease Registries in Europe (Articolo in rivista) (literal)
Anno
  • 2013-01-01T00:00:00+01:00 (literal)
Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#doi
  • 10.1159/000355934 (literal)
Alternative label
  • Taruscio, D.; Gainotti, S.; Mollo, E.; Vittozzi, L.; Bianchi, F.; Ensini, M.; Posada, M. (2013)
    The Current Situation and Needs of Rare Disease Registries in Europe
    in Public health genomics (Print); Karger, Basel (Swaziland)
    (literal)
Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#autori
  • Taruscio, D.; Gainotti, S.; Mollo, E.; Vittozzi, L.; Bianchi, F.; Ensini, M.; Posada, M. (literal)
Pagina inizio
  • 288 (literal)
Pagina fine
  • 298 (literal)
Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#numeroVolume
  • 16 (literal)
Rivista
Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#pagineTotali
  • 11 (literal)
Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#numeroFascicolo
  • 6 (literal)
Note
  • PubMe (literal)
  • ISI Web of Science (WOS) (literal)
Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#affiliazioni
  • Istituto Superiore di Sanita'; Fdn Toscana Gabriele Monasterio; Consiglio Nazionale delle Ricerche (CNR); European Org Rare Dis EURORDIS; Inst Salud Carlos III; Consortium Biomed Res Rare Dis CIBERER (literal)
Titolo
  • The Current Situation and Needs of Rare Disease Registries in Europe (literal)
Abstract
  • Background: Registries are considered key instruments for developing rare disease (RD) clinical research, enhancing patient care and health planning, and improving social, economic and quality-of-life outcomes. Indeed, it is usually the case that no single institution, and in many cases no single country, has sufficient data to provide results that can be applied broadly to clinical and translational research. However, the fragmentation and heterogeneity of the registries, which are often the result of spontaneous initiatives, limit the general applicability of their observations. Methods: An inquiry has been carried out by the EPIRARE, a European Union (EU)-funded project ('Building Consensus and Synergies for the EU Registration of Rare Disease Patients') aiming at paving the way to the creation of a European Platform for RD Registries, by means of an on-line questionnaire among European RD registries on their main activities and needs, the way they deal with methodological, technical and regulatory issues and the way they find resources to carry on their activities. Results: In spite of the heterogeneity of the European registries, some elements of relevance for an action to improve the situation of patient registries in the EU are apparent. The needs more frequently indicated by registry holders were financial support, motivation of data providers, data quality assessment, improvement of communication and visibility, and extension of collaborations. Moreover, the registry holders were in favor of a common EU platform providing services for RD registries. Conclusion: It appears that the current situation of the European registries provides the transition towards a more uniform, higher quality and better coordinated approach. (C) 2013 S. Karger AG, Basel (literal)
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