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dc.contributor.authorAlonso, Veronica-
dc.contributor.authorMargolles Martins, Mario-
dc.coverage.spatialBerlineng
dc.coverage.temporal2014eng
dc.date.accessioned2014-11-25T12:28:26Z-
dc.date.available2014-11-25T12:28:26Z-
dc.date.issued2014-11-11-
dc.identifier.citationAlonso et al.: National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR). Orphanet Journal of Rare Diseases 2014 9(Suppl 1):P5eng
dc.identifier.urihttps://ria.asturias.es/RIA/handle/123456789/4682-
dc.descriptionPoster publicado en: Orphanet Journal of Rare Diseases 2014, 9(Suppl 1):P5eng
dc.description.abstractThe development of a national Rare Diseases (RD) registry in Spain was launched in 2012 with the project SpainRDR, supported by the International Rare Diseases Research Consortium (IRDiRC). includes two different strategies: patient registries addressed to patient outcome research and population-based registries addressed to epidemiologic research, health and social planning [1]. The pilot study aims to detect the difficulties of eveloping the national and population-based RD registryeng
dc.description.sponsorshipOn behalf SpainRDR group. Financial agency: Instituto de Salud Carlos III - International Rare Diseases Research Consortium (IRDiRC). Grant no. IR11- RDR.eng
dc.description.statementofresponsibility7th European Conference on Rare Diseases and Orphan Productseng
dc.language.isoengeng
dc.relation.isreferencedbySí, esta versión ha sido citadaeng
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dc.rights.urihttp://creativecommons.org/licenses/by-nc-sa/3.0/deed.eseng
dc.subjectInternational Rare Diseases Research Consortiumeng
dc.subjectSpainRDReng
dc.subjectSpaineng
dc.subjectSpanish Rare Diseases Registrieseng
dc.subject.classificationPublicadoeng
dc.titleNational rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)eng
dc.typepostereng
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