Management of rare movement disorders in Europe: outcome of surveys of the European Reference Network for Rare Neurological Diseases.,European Journal of Neurology

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Management of rare movement disorders in Europe: outcome of surveys of the European Reference Network for Rare Neurological Diseases.
European Journal of Neurology ( IF 5.1 ) Pub Date : 2020-05-09 , DOI: 10.1111/ene.14302
C Painous _{1,

2} , N J H van Os ₃ , A Delamarre _{4,

5} , I Michailoviene ₆ , M J Marti _{1,

2} , B P van de Warrenburg ₃ , W G Meissner _{4,

5,

7,

8} , A Utkus ₆ , C Reinhard _{9,

10} , H Graessner _{9,

10} , M A Tijssen _{11,

12}

Affiliation

Neurology Service, Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Hospital Clínic Universitari, University of Barcelona, Barcelona, Spain.
Centro de Investigación Biomédica en Red de Enfermedades Neurodegenerativas (CIBERNED), Barcelona, Spain.
Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands.
Institut des Maladies Neurodégénératives, UMR 5293, Université de Bordeaux, Bordeaux, France.
UMR 5293, CNRS, Institut des Maladies Neurodégénératives, Bordeaux, France.
Faculty of Medicine, Institute of Biomedical Sciences, Vilnius, Vilnius University, Lithuania.
Department of Medicine, University of Otago, Christchurch, New Zealand.
New Zealand Brain Research Institute, Christchurch, New Zealand.
Institute for Medical Genetics and Applied Genomics, University of Tübingen, Tübingen, Germany.
Centre for Rare Diseases, University Hospital Tübingen, Tübingen, Germany.
Department of Neurology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
Expertise Center Movement Disorders Groningen, University Medical Center Groningen, Groningen, The Netherlands.

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.

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