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.

AP HP Pediatric Sleep Center CHU Robert Debré Paris France National Reference Centre for Orphan Diseases Narcolepsy Idiopathic Hypersomnia and Kleine Levin Syndrome Paris France

Center for Integrative Genomics University of Lausanne Lausanne Switzerland Center for Investigation and Research in Sleep Lausanne University Hospital Lausanne Switzerland

Center for Integrative Genomics University of Lausanne Lausanne Switzerland Centre Neuchâtelois de Psychiatrie Neuchâtel Switzerland

Center for Sleep Medicine Sleep Research and Epileptology Klinik Barmelweid AG Barmelweid Switzerland

Centre de Référence Nationale Maladies Rares Narcolepsie et Hypersomnie Idiopathique Service Neurologie Hôpital Gui de Chauliac INSERM U1061 Montpellier France

Department of Biomedical and Neuromotor Sciences Alma Mater Studiorum University of Bologna Bologna Italy IRCCS Institute of Neurological Sciences Bologna Italy

Department of Clinical Neurophysiology Danish Center for Sleep Medicine University of Copenhagen Glostrup Denmark

Department of Clinical Neurophysiology Institute of Psychiatry and Neurology Warsaw Poland

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

Department of Neurology Inselspital Bern University Hospital and University of Bern Switzerland

Department of Psychiatry and Psychotherapy University of Regensburg Regensburg Germany

Department of Sleep Medicine and Neuromuscular Disorders University of Münster Münster Germany

Fundacio d'Investigacio Sanitaria de les illes balears Hospital Universitari Son Espases Palma de Mallorca Spain

Helsinki Sleep Clinic Vitalmed Research Center Helsinki Finland Department of Clinical Neurosciences University of Helsinki Helsinki Finland

Institute of Molecular Medicine Portugal Medical Faculty Lisbon University Lisbon Portugal

Molecular Sleep Laboratory Department of Diagnostics and Danish Center for Sleep Medicine Department of Clinical Neurophysiology Glostrup Hospital Glostrup Denmark

Neurology Department and Centre of Clinical Neurosciences 1st Faculty of Medicine Charles University and General University Hospital Prague Czech Republic

Neurology Department EOC Ospedale Regionale di Lugano Lugano Ticino Switzerland Department of Neurology Inselspital Bern University Hospital and University of Bern Switzerland

Neurology Department Hephata Klinik Schwalmstadt Germany Neurology Department Philipps Universität Marburg Marburg Germany

Neurology Department IC Sleep Research Centre Oasi Institute IRCCS Troina Italy

Neurology Department Medical Faculty of P J Safarik University University Hospital of L Pasteur Kosice Kosice Slovak Republic

Neurology Department Sleep Disorders Clinic Innsbruck Medical University Innsbruck Austria

Neurology Department University Hospital Zurich Zurich Switzerland

Neurology Service Institut de Neurociències Hospital Clínic University of Barcelona Barcelona Spain

Serviço de Neurofisiologia Hospital Santo António Centro Hospitalar do Porto and Instituto Ciências Biomédicas Abel Salazar Universidade do Porto Porto Portugal

Sleep and Epilepsy Unit Clinical Neurophysiology Department Gregorio Marañón University Hospital Complutense University of Madrid Madrid Spain

Sleep and Respiratory Medicine Hon Reader University of Edinburgh Edinburgh UK

Sleep Medicine Center Kempenhaeghe Heeze The Netherlands Eindhoven University of Technology Eindhoven The Netherlands

Sleep Unit Integral Center of Neurosciences A C Madrid University Hospitals Móstoles Spain

Social and Developmental Psychology Sapienza University Rome Italy

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