The European Narcolepsy Network (EU-NN) database

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Ramin Khatami, Gianina Luca, Christian R Baumann, Claudio L Bassetti, Oliviero Bruni, Francesca Canellas, Yves Dauvilliers, Rafael Del Rio-Villegas, Eva Feketeova, Raffaele Ferri, Peter Geisler, Birgit Högl, Poul Jennum, Birgitte R Kornum, Michel Lecendreux, Antonio Martins-da-Silva, Johannes Mathis, Geert Mayer, Teresa Paiva, Markku Partinen & 11 others Rosa Peraita Adrados, Guiseppe Plazzi, Joan Santamaria, Karel Sonka, Renata Riha, Mehdi Tafti, Aleksandra Wierzbicka, Peter Young, Gert Jan Lammers, Sebastiaan Overeem, European Narcolepsy Network

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-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.

Original languageEnglish
JournalJournal of Sleep Research
Volume25
Issue number3
Pages (from-to)356-64
Number of pages9
ISSN0962-1105
DOIs
Publication statusPublished - Jun 2016

    Research areas

  • Journal Article

ID: 176995200