Khatami, Ramin and Luca, Gianina and Baumann, Christian R. and Bassetti, Claudio L. and Bruni, Oliviero and Canellas, Francesca and Dauvilliers, Yves and Del Rio-Villegas, Rafael and Feketeova, Eva and Ferri, Raffaele and Geisler, Peter and Hoegl, Birgit and Jennum, Poul and Kornum, Birgitte R. and Lecendreux, Michel and Martins-Da-Silva, Antonio and Mathis, Johannes and Mayer, Geert and Paiva, Teresa and Partinen, Markku and Peraita-Adrados, Rosa and Plazzi, Guiseppe and Santamaria, Joan and Sonka, Karel and Riha, Renata and Tafti, Mehdi and Wierzbicka, Aleksandra and Young, Peter and Lammers, Gert Jan and Overeem, Sebastiaan (2016) The European Narcolepsy Network (EU-NN) database. JOURNAL OF SLEEP RESEARCH, 25 (3). pp. 356-364. ISSN 0962-1105, 1365-2869
Full text not available from this repository. (Request a copy)Abstract
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 sideeffects, and will contribute to improve clinical trial designs and provide facilities to further develop phase III trials.
| Item Type: | Article |
|---|---|
| Uncontrolled Keywords: | QUALITY-OF-LIFE; HYPOCRETIN OREXIN DEFICIENCY; HYPOTHALAMIC NEUROPEPTIDES; CATAPLEXY; HEALTH; POPULATION; PREDICTORS; COHORT; RISK; epidemiology; European Narcolepsy Centres; multicentre studies; narcolepsy; prospective data collection; standardized prospective database |
| Subjects: | 600 Technology > 610 Medical sciences Medicine |
| Divisions: | Medicine > Lehrstuhl für Psychiatrie und Psychotherapie |
| Depositing User: | Dr. Gernot Deinzer |
| Date Deposited: | 21 Mar 2019 10:03 |
| Last Modified: | 21 Mar 2019 10:03 |
| URI: | https://pred.uni-regensburg.de/id/eprint/2805 |
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