title: The European Narcolepsy Network (EU-NN) database.
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.
authors.affiliation: Center for Sleep Medicine, Sleep Research and Epileptology, Klinik Barmelweid AG, Barmelweid, Switzerland.
authors.forename: Ramin
authors.initials: R
authors.lastname: Khatami
authors.affiliation: Center for Integrative Genomics, University of Lausanne, Lausanne, Switzerland.|Centre Neuchâtelois de Psychiatrie, Neuchâtel, Switzerland.
authors.forename: Gianina
authors.initials: G
authors.lastname: Luca
authors.affiliation: Neurology Department, University Hospital Zurich, Zurich, Switzerland.
authors.forename: Christian R
authors.initials: CR
authors.lastname: Baumann
authors.affiliation: Neurology Department, EOC, Ospedale Regionale di Lugano, Lugano, Ticino, Switzerland.|Department of Neurology, Inselspital, Bern University Hospital, and University of Bern, Switzerland.
authors.forename: Claudio L
authors.initials: CL
authors.lastname: Bassetti
authors.affiliation: Social and Developmental Psychology, Sapienza University, Rome, Italy.
authors.forename: Oliviero
authors.initials: O
authors.lastname: Bruni
authors.affiliation: Fundacio d'Investigacio Sanitaria de les illes balears, Hospital Universitari Son Espases, Palma de Mallorca, Spain.
authors.forename: Francesca
authors.initials: F
authors.lastname: Canellas
authors.affiliation: Centre de Référence Nationale Maladies Rares, Narcolepsie et Hypersomnie Idiopathique, Service Neurologie, Hôpital Gui-de-Chauliac, INSERM U1061, Montpellier, France.
authors.forename: Yves
authors.initials: Y
authors.lastname: Dauvilliers
authors.affiliation: Sleep Unit, Integral Center of Neurosciences A.C (HM CINAC), Madrid University Hospitals, Móstoles, Spain.
authors.forename: Rafael
authors.initials: R
authors.lastname: Del Rio-Villegas
authors.affiliation: Neurology Department, Medical Faculty of P. J. Safarik University, University Hospital of L. Pasteur Kosice, Kosice, Slovak Republic.
authors.forename: Eva
authors.initials: E
authors.lastname: Feketeova
authors.affiliation: Neurology Department IC, Sleep Research Centre, Oasi Institute IRCCS, Troina, Italy.
authors.forename: Raffaele
authors.initials: R
authors.lastname: Ferri
authors.affiliation: Department of Psychiatry and Psychotherapy, University of Regensburg, Regensburg, Germany.
authors.forename: Peter
authors.initials: P
authors.lastname: Geisler
authors.affiliation: Neurology Department, Sleep Disorders Clinic, Innsbruck Medical University, Innsbruck, Austria.
authors.forename: Birgit
authors.initials: B
authors.lastname: Högl
authors.affiliation: Department of Clinical Neurophysiology, Danish Center for Sleep Medicine, University of Copenhagen, Glostrup, Denmark.
authors.forename: Poul
authors.initials: P
authors.lastname: Jennum
authors.affiliation: Molecular Sleep Laboratory, Department of Diagnostics and Danish Center for Sleep Medicine, Department of Clinical Neurophysiology, Glostrup Hospital, Glostrup, Denmark.
authors.forename: Birgitte R
authors.initials: BR
authors.lastname: Kornum
authors.affiliation: AP-HP, Pediatric Sleep Center, CHU Robert-Debré, Paris, France.|National Reference Centre for Orphan Diseases, Narcolepsy, Idiopathic Hypersomnia and Kleine-Levin Syndrome (CNR narcolepsie-hypersomnie), Paris, France.
authors.forename: Michel
authors.initials: M
authors.lastname: Lecendreux
authors.affiliation: Serviço de Neurofisiologia, Hospital Santo António/Centro Hospitalar do Porto and Instituto Ciências Biomédicas Abel Salazar, Universidade do Porto, Porto, Portugal.
authors.forename: Antonio
authors.initials: A
authors.lastname: Martins-da-Silva
authors.affiliation: Department of Neurology, Inselspital, Bern University Hospital, and University of Bern, Switzerland.
authors.forename: Johannes
authors.initials: J
authors.lastname: Mathis
authors.affiliation: Neurology Department, Hephata Klinik, Schwalmstadt, Germany.|Neurology Department, Philipps-Universität Marburg, Marburg, Germany.
authors.forename: Geert
authors.initials: G
authors.lastname: Mayer
authors.affiliation: Institute of Molecular Medicine Portugal, Medical Faculty Lisbon University, Lisbon, Portugal.
authors.forename: Teresa
authors.initials: T
authors.lastname: Paiva
authors.affiliation: Helsinki Sleep Clinic, Vitalmed Research Center, Helsinki, Finland.|Department of Clinical Neurosciences, University of Helsinki, Helsinki, Finland.
authors.forename: Markku
authors.initials: M
authors.lastname: Partinen
authors.affiliation: Sleep and Epilepsy Unit, Clinical Neurophysiology Department, Gregorio Marañón University Hospital, Complutense University of Madrid (UCM), Madrid, Spain.
authors.forename: Rosa
authors.initials: R
authors.lastname: Peraita-Adrados
authors.affiliation: Department of Biomedical and Neuromotor Sciences (DIBINEM), Alma Mater Studiorum, University of Bologna, Bologna, Italy.|IRCCS Institute of Neurological Sciences, Bologna, Italy.
authors.forename: Guiseppe
authors.initials: G
authors.lastname: Plazzi
authors.affiliation: Neurology Service, Institut de Neurociències Hospital Clínic, University of Barcelona, Barcelona, Spain.
authors.forename: Joan
authors.initials: J
authors.lastname: Santamaria
authors.affiliation: Neurology Department and Centre of Clinical Neurosciences, First Faculty of Medicine, Charles University and General University Hospital, Prague, Czech Republic.
authors.forename: Karel
authors.initials: K
authors.lastname: Sonka
authors.affiliation: Sleep and Respiratory Medicine, Hon Reader, University of Edinburgh, Edinburgh, UK.
authors.forename: Renata
authors.initials: R
authors.lastname: Riha
authors.affiliation: Center for Integrative Genomics, University of Lausanne, Lausanne, Switzerland.|Center for Investigation and Research in Sleep, Lausanne University Hospital, Lausanne, Switzerland.
authors.forename: Mehdi
authors.initials: M
authors.lastname: Tafti
authors.affiliation: Department of Clinical Neurophysiology, Institute of Psychiatry and Neurology, Warsaw, Poland.
authors.forename: Aleksandra
authors.initials: A
authors.lastname: Wierzbicka
authors.affiliation: Department of Sleep Medicine and Neuromuscular Disorders, University of Münster, Münster, Germany.
authors.forename: Peter
authors.initials: P
authors.lastname: Young
authors.affiliation: Department of Neurology and Clinical Neurophysiology, Leiden University Medical Center, Leiden, The Netherlands.|Sleep Wake Center SEIN Heemstede, Stichting Epilepsie Instellingen Nederland, Heemstede, The Netherlands.
authors.forename: Gert Jan
authors.initials: GJ
authors.lastname: Lammers
authors.affiliation: Sleep Medicine Center Kempenhaeghe, Heeze, The Netherlands.|Eindhoven University of Technology, Eindhoven, The Netherlands.
authors.forename: Sebastiaan
authors.initials: S
authors.lastname: Overeem
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002385:Cataplexy / Q000188:drug therapy / Q000453:epidemiology; D016208:Databases, Factual / Q000592:standards; D005060:Europe / Q000453:epidemiology; D005260:Female; D006801:Humans; D033181:Information Dissemination; D020407:Internet; D008297:Male; D008875:Middle Aged; D009290:Narcolepsy / Q000188:drug therapy / Q000453:epidemiology; D010641:Phenotype; D011358:Product Surveillance, Postmarketing; D011446:Prospective Studies; D011786:Quality Control; D035583:Rare Diseases / Q000188:drug therapy / Q000453:epidemiology; D012042:Registries / Q000592:standards; D055815:Young Adult
keywords: European Narcolepsy Centres; epidemiology; multicentre studies; narcolepsy; prospective data collection; standardized prospective database