The European Narcolepsy Network (EU-NN) database.

Details

Serval ID
serval:BIB_8441D46BB13A
Type
Article: article from journal or magazin.
Publication sub-type
Review (review): journal as complete as possible of one specific subject, written based on exhaustive analyses from published work.
Collection
Publications
Institution
Title
The European Narcolepsy Network (EU-NN) database.
Journal
Journal of Sleep Research
Author(s)
Khatami R., Luca G., Baumann C.R., Bassetti C.L., Bruni O., Canellas F., Dauvilliers Y., Del Rio-Villegas R., Feketeova E., Ferri R., Geisler P., Högl B., Jennum P., Kornum B.R., Lecendreux M., Martins-da-Silva A., Mathis J., Mayer G., Paiva T., Partinen M., Peraita-Adrados R., Plazzi G., Santamaria J., Sonka K., Riha R., Tafti M., Wierzbicka A., Young P., Lammers G.J., Overeem S., European Narcolepsy Network
Contributor(s)
European Narcolepsy Network
ISSN
1365-2869 (Electronic)
ISSN-L
0962-1105
Publication state
Published
Issued date
2016
Peer-reviewed
Oui
Volume
25
Number
3
Pages
356-364
Language
english
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 side-effects, and will contribute to improve clinical trial designs and provide facilities to further develop phase III trials.
Pubmed
Web of science
Open Access
Yes
Create date
17/02/2016 16:14
Last modification date
20/08/2019 14:43
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