{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T16:42:52Z","timestamp":1790786572060,"version":"4.1.0"},"reference-count":14,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2020,6,19]],"date-time":"2020-06-19T00:00:00Z","timestamp":1592524800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Euro J of Neurology"],"published-print":{"date-parts":[[2020,8]]},"abstract":"<jats:sec><jats:title>Background and purpose<\/jats:title><jats:p>The diagnosis of rare movement disorders is difficult and specific management programmes are not well defined. Thus, in order to capture and assess care needs, the European Reference Network for Rare Neurological Diseases has performed an explorative care need survey across all European Union (EU) countries.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This is a multicentre, cross\u2010sectional study. A survey about the management of different rare movement disorders (group 1, dystonia, paroxysmal dyskinesia and neurodegeneration with brain iron accumulation; group 2, ataxias and hereditary spastic paraparesis; group 3, atypical parkinsonism; group 4, choreas) was sent to an expert in each group of disorders from each EU country.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Some EU countries claimed for an increase of teaching courses. Genetic testing was not readily available in a significant number of countries. Regarding management, patients\u2019 accessibility to tertiary hospitals, to experts and to multidisciplinary teams was unequal between countries and groups of diseases. The availability of therapeutic options, such as botulinum toxin or more invasive treatments like deep brain stimulation, was limited in some countries.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The management of these conditions in EU countries is unequal. The survey provides evidence that a European care\u2010focused network that is able to address the unmet rare neurological disease care needs and inequalities is highly warranted.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ene.14302","type":"journal-article","created":{"date-parts":[[2020,5,9]],"date-time":"2020-05-09T10:34:48Z","timestamp":1589020488000},"page":"1493-1500","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":22,"title":["Management of rare movement disorders in Europe: outcome of surveys of the European Reference Network for Rare Neurological Diseases"],"prefix":"10.1111","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7027-3093","authenticated-orcid":false,"given":"C.","family":"Painous","sequence":"first","affiliation":[{"name":"Neurology Service Institut d'Investigacions Biom\u00e8diques August Pi i Sunyer (IDIBAPS) Hospital Cl\u00ednic Universitari University of Barcelona Barcelona Spain"},{"name":"Centro de Investigaci\u00f3n Biom\u00e9dica en Red de Enfermedades Neurodegenerativas (CIBERNED) Barcelona Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"N. J. H.","family":"van Os","sequence":"additional","affiliation":[{"name":"Department of Neurology Donders Institute for Brain, Cognition and Behaviour Radboud University Medical Center Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"Delamarre","sequence":"additional","affiliation":[{"name":"Institut des Maladies Neurod\u00e9g\u00e9n\u00e9ratives UMR 5293 Universit\u00e9 de Bordeaux Bordeaux France"},{"name":"UMR 5293 CNRS, Institut des Maladies Neurod\u00e9g\u00e9n\u00e9ratives Bordeaux France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"I.","family":"Michailoviene","sequence":"additional","affiliation":[{"name":"Faculty of Medicine Institute of Biomedical Sciences Vilnius Vilnius University Lithuania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M. J.","family":"Marti","sequence":"additional","affiliation":[{"name":"Neurology Service Institut d'Investigacions Biom\u00e8diques August Pi i Sunyer (IDIBAPS) Hospital Cl\u00ednic Universitari University of Barcelona Barcelona Spain"},{"name":"Centro de Investigaci\u00f3n Biom\u00e9dica en Red de Enfermedades Neurodegenerativas (CIBERNED) Barcelona Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"B. P.","family":"van de Warrenburg","sequence":"additional","affiliation":[{"name":"Department of Neurology Donders Institute for Brain, Cognition and Behaviour Radboud University Medical Center Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"W. G.","family":"Meissner","sequence":"additional","affiliation":[{"name":"Institut des Maladies Neurod\u00e9g\u00e9n\u00e9ratives UMR 5293 Universit\u00e9 de Bordeaux Bordeaux France"},{"name":"UMR 5293 CNRS, Institut des Maladies Neurod\u00e9g\u00e9n\u00e9ratives Bordeaux France"},{"name":"Department of Medicine University of Otago Christchurch New Zealand"},{"name":"New Zealand Brain Research Institute Christchurch New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"Utkus","sequence":"additional","affiliation":[{"name":"Faculty of Medicine Institute of Biomedical Sciences Vilnius Vilnius University Lithuania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"C.","family":"Reinhard","sequence":"additional","affiliation":[{"name":"Institute for Medical Genetics and Applied Genomics University of T\u00fcbingen T\u00fcbingen Germany"},{"name":"Centre for Rare Diseases University Hospital T\u00fcbingen T\u00fcbingen Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H.","family":"Graessner","sequence":"additional","affiliation":[{"name":"Institute for Medical Genetics and Applied Genomics University of T\u00fcbingen T\u00fcbingen Germany"},{"name":"Centre for Rare Diseases University Hospital T\u00fcbingen T\u00fcbingen Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5783-571X","authenticated-orcid":false,"given":"M. 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