{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,29]],"date-time":"2026-10-29T19:43:13Z","timestamp":1793302993353,"version":"4.5.0"},"reference-count":22,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2016,1,26]],"date-time":"2016-01-26T00:00:00Z","timestamp":1453766400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Sleep Research"],"published-print":{"date-parts":[[2016,6]]},"abstract":"<jats:title>Summary<\/jats:title><jats:p>Narcolepsy 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\u2010specific 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\u2010based 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\u2010marketing medication side\u2010effects, and will contribute to improve clinical trial designs and provide facilities to further develop phase <jats:styled-content style=\"fixed-case\">III<\/jats:styled-content> trials.<\/jats:p>","DOI":"10.1111\/jsr.12374","type":"journal-article","created":{"date-parts":[[2016,1,26]],"date-time":"2016-01-26T03:34:53Z","timestamp":1453779293000},"page":"356-364","source":"Crossref","is-referenced-by-count":60,"title":["The European Narcolepsy Network (<scp>EU<\/scp>\u2010<scp>NN<\/scp>) database"],"prefix":"10.1111","volume":"25","author":[{"given":"Ramin","family":"Khatami","sequence":"first","affiliation":[{"name":"Center for Sleep Medicine, Sleep Research and Epileptology Klinik Barmelweid AG Barmelweid Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gianina","family":"Luca","sequence":"additional","affiliation":[{"name":"Center for Integrative Genomics University of Lausanne Lausanne Switzerland"},{"name":"Centre Neuch\u00e2telois de Psychiatrie Neuch\u00e2tel Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian R.","family":"Baumann","sequence":"additional","affiliation":[{"name":"Neurology Department University Hospital Zurich Zurich Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudio L.","family":"Bassetti","sequence":"additional","affiliation":[{"name":"Neurology Department, EOC Ospedale Regionale di Lugano Lugano Ticino Switzerland"},{"name":"Department of Neurology Inselspital Bern University Hospital, and University of Bern Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Oliviero","family":"Bruni","sequence":"additional","affiliation":[{"name":"Social and Developmental Psychology Sapienza University Rome Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francesca","family":"Canellas","sequence":"additional","affiliation":[{"name":"Fundacio d'Investigacio Sanitaria de les illes balears Hospital Universitari Son Espases Palma de Mallorca Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yves","family":"Dauvilliers","sequence":"additional","affiliation":[{"name":"Centre de R\u00e9f\u00e9rence Nationale Maladies Rares Narcolepsie et Hypersomnie Idiopathique Service Neurologie H\u00f4pital Gui\u2010de\u2010Chauliac INSERM U1061 Montpellier France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rafael","family":"Del Rio\u2010Villegas","sequence":"additional","affiliation":[{"name":"Sleep Unit Integral Center of Neurosciences A.C (HM CINAC) Madrid University Hospitals M\u00f3stoles Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eva","family":"Feketeova","sequence":"additional","affiliation":[{"name":"Neurology Department Medical Faculty of P. 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