The European Narcolepsy Network (EU-NN) database
Jazyk angličtina Země Anglie, Velká Británie Médium print-electronic
Typ dokumentu časopisecké články
PubMed
26809504
DOI
10.1111/jsr.12374
Knihovny.cz E-zdroje
- Klíčová slova
- European Narcolepsy Centres, epidemiology, multicentre studies, narcolepsy, prospective data collection, standardized prospective database,
- MeSH
- databáze faktografické * normy MeSH
- dospělí MeSH
- fenotyp MeSH
- internet MeSH
- kataplexie farmakoterapie epidemiologie MeSH
- lidé středního věku MeSH
- lidé MeSH
- mladiství MeSH
- mladý dospělý MeSH
- narkolepsie * farmakoterapie epidemiologie MeSH
- postmarketingový dozor MeSH
- prospektivní studie MeSH
- registrace * normy MeSH
- řízení kvality MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- šíření informací MeSH
- vzácné nemoci farmakoterapie epidemiologie MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mladiství MeSH
- mladý dospělý MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Evropa epidemiologie MeSH
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
Center for Integrative Genomics University of Lausanne Lausanne Switzerland
Center for Investigation and Research in Sleep Lausanne University Hospital Lausanne Switzerland
Centre Neuchâtelois de Psychiatrie Neuchâtel Switzerland
Department of Clinical Neurophysiology Institute of Psychiatry and Neurology Warsaw Poland
Department of Clinical Neurosciences University of Helsinki Helsinki Finland
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
Eindhoven University of Technology Eindhoven The Netherlands
Helsinki Sleep Clinic Vitalmed Research Center Helsinki Finland
Institute of Molecular Medicine Portugal Medical Faculty Lisbon University Lisbon Portugal
IRCCS Institute of Neurological Sciences Bologna Italy
Neurology Department EOC Ospedale Regionale di Lugano Lugano Ticino Switzerland
Neurology Department Hephata Klinik Schwalmstadt Germany
Neurology Department IC Sleep Research Centre Oasi Institute IRCCS Troina Italy
Neurology Department Philipps Universität Marburg Marburg Germany
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
Sleep and Respiratory Medicine Hon Reader University of Edinburgh Edinburgh UK
Sleep Medicine Center Kempenhaeghe Heeze The Netherlands
Sleep Unit Integral Center of Neurosciences A C Madrid University Hospitals Móstoles Spain
Social and Developmental Psychology Sapienza University Rome Italy
Citace poskytuje Crossref.org
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Treatment cost of narcolepsy with cataplexy in Central Europe