TY - JOUR

T1 - The European Narcolepsy Network (EU-NN) database

AU - Khatami, Ramin

AU - Luca, Gianina

AU - Baumann, Christian R

AU - Bassetti, Claudio L

AU - Bruni, Oliviero

AU - Canellas, Francesca

AU - Dauvilliers, Yves

AU - Del Rio-Villegas, Rafael

AU - Feketeova, Eva

AU - Ferri, Raffaele

AU - Geisler, Peter

AU - Högl, Birgit

AU - Jennum, Poul

AU - Kornum, Birgitte R

AU - Lecendreux, Michel

AU - Martins-da-Silva, Antonio

AU - Mathis, Johannes

AU - Mayer, Geert

AU - Paiva, Teresa

AU - Partinen, Markku

AU - Peraita Adrados, Rosa

AU - Plazzi, Guiseppe

AU - Santamaria, Joan

AU - Sonka, Karel

AU - Riha, Renata

AU - Tafti, Mehdi

AU - Wierzbicka, Aleksandra

AU - Young, Peter

AU - Lammers, Gert Jan

AU - Overeem, Sebastiaan

AU - European Narcolepsy Network

N1 - © 2016 European Sleep Research Society.

PY - 2016/6

Y1 - 2016/6

N2 - 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.

AB - 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.

KW - Journal Article

U2 - 10.1111/jsr.12374

DO - 10.1111/jsr.12374

M3 - Journal article

C2 - 26809504

VL - 25

SP - 356

EP - 364

JO - Journal of Sleep Research (Print)

JF - Journal of Sleep Research (Print)

SN - 0962-1105

IS - 3

ER -