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The European Narcolepsy Network (EU-NN) database

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dc.contributor.authorKhatami, Ramin
dc.contributor.authorLuca, Gianina
dc.contributor.authorBaumann, Christian R.
dc.contributor.authorBassetti, Claudio L.
dc.contributor.authorBruni, Oliviero
dc.contributor.authorCanellas, Francesca
dc.contributor.authorDauvilliers, Yves
dc.contributor.authorDel Rio-Villegas, Rafael
dc.contributor.authorFeketeova, Eva
dc.contributor.authorFerri, Raffaele
dc.contributor.authorGeisler, Peter
dc.contributor.authorHögl, Birgit
dc.contributor.authorJennum, Poul
dc.contributor.authorKornum, Birgitte R.
dc.contributor.authorLecendreux, Michel
dc.contributor.authorMartins-da-Silva, Antonio
dc.contributor.authorMathis, Johannes
dc.contributor.authorMayer, Geert
dc.contributor.authorPaiva, Teresa
dc.contributor.authorPartinen, Markku
dc.contributor.authorPeraita-Adrados, Rosa
dc.contributor.authorPlazzi, Guiseppe
dc.contributor.authorSantamaria, Joan
dc.contributor.authorSonka, Karel
dc.contributor.authorRiha, Renata
dc.contributor.authorTafti, Mehdi
dc.contributor.authorWierzbicka, Aleksandra
dc.contributor.authorYoung, Peter
dc.contributor.authorLammers, Gert Jan
dc.contributor.authorOvereem, Sebastiaan
dc.date.accessioned2021-06-25T16:13:50Z
dc.date.available2021-06-25T16:13:50Z
dc.date.issued2016
dc.description© 2016 European Sleep Research Societypt_PT
dc.description.abstractNarcolepsy with cataplexy is a rare disease with an estimated prevalence of 0.02% in European populations. Narcolepsy shares many features of rare disorders, in particular the lack of awareness of the disease with serious consequences for healthcare supply. Similar to other rare diseases, only a few European countries have registered narcolepsy cases in databases of the International Classification of Diseases or in registries of the European health authorities. A promising approach to identify disease-specific adverse health effects and needs in healthcare delivery in the field of rare diseases is to establish a distributed expert network. A first and important step is to create a database that allows collection, storage and dissemination of data on narcolepsy in a comprehensive and systematic way. Here, the first prospective web-based European narcolepsy database hosted by the European Narcolepsy Network is introduced. The database structure, standardization of data acquisition and quality control procedures are described, and an overview provided of the first 1079 patients from 18 European specialized centres. Due to its standardization this continuously increasing data pool is most promising to provide a better insight into many unsolved aspects of narcolepsy and related disorders, including clear phenotype characterization of subtypes of narcolepsy, more precise epidemiological data and knowledge on the natural history of narcolepsy, expectations about treatment effects, identification of post-marketing medication side-effects, and will contribute to improve clinical trial designs and provide facilities to further develop phase III trials.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationJ Sleep Res. 2016 Jun;25(3):356-364pt_PT
dc.identifier.doi10.1111/jsr.12374pt_PT
dc.identifier.eissn1365-2869
dc.identifier.issn0962-1105
dc.identifier.urihttp://hdl.handle.net/10451/48756
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherJohn Wiley & Sons, Inc.pt_PT
dc.relation.publisherversionhttps://onlinelibrary.wiley.com/journal/13652869pt_PT
dc.subjectEuropean Narcolepsy Centrespt_PT
dc.subjectEpidemiologypt_PT
dc.subjectMulticentre studiespt_PT
dc.subjectNarcolepsypt_PT
dc.subjectProspective data collectionpt_PT
dc.subjectStandardized prospective databasept_PT
dc.titleThe European Narcolepsy Network (EU-NN) databasept_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.endPage364pt_PT
oaire.citation.issue3pt_PT
oaire.citation.startPage356pt_PT
oaire.citation.titleJournal of Sleep Researchpt_PT
oaire.citation.volume25pt_PT
person.familyNamePaiva
person.givenNameMaria Teresa Aguiar dos Santos
person.identifier1465255
person.identifier.ciencia-id7B10-224A-DB1D
person.identifier.orcid0000-0002-7937-7841
person.identifier.scopus-author-id7005950248
rcaap.rightsrestrictedAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublicationc720c5dd-a926-4737-938d-a90e782dd837
relation.isAuthorOfPublication.latestForDiscoveryc720c5dd-a926-4737-938d-a90e782dd837

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