title: Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes.
abstract: OBJECTIVE
  Dystonia is difficult to recognize due to its large phenomenological complexity. Thus, the use of experts in dystonia is essential for better recognition and management of dystonia syndromes (DS). Our aim was to document managing strategies, facilities and expertise available in various European countries in order to identify which measures should be implemented to improve the management of DS.
  
  
  METHODS
  A survey was conducted, funded by the Cooperation in Science and Technology, via the management committee of the European network for the study of DS, which is formed from representatives of the 24 countries involved.
  
  
  RESULTS
  Lack of specific training in dystonia by general neurologists, general practitioners as well as other allied health professionals was universal in all countries surveyed. Genetic testing for rare dystonia mutations is not readily available in a significant number of countries and neurophysiological studies are difficult to perform due to a lack of experts in this field of movement disorders. Tetrabenazine is only readily available for treatment of dystonia in half of the surveyed countries. Deep brain stimulation is available in three-quarters of the countries, but other surgical procedures are only available in one-quarter of countries.
  
  
  CONCLUSIONS
  Internationally, collaboration in training, advanced diagnosis, treatment and research of DS and, locally, in each country the creation of multidisciplinary teams for the management of dystonia patients could provide the basis for improving all aspects of dystonia management across Europe.
authors.affiliation: Neurology Service, Hospital de São Bernardo, Centro Hospitalar de Setúbal, Setúbal, Portugal.|Clinical Research Unit, Institute of Molecular Medicine, Lisbon, Portugal.
authors.forename: A
authors.initials: A
authors.lastname: Valadas
authors.affiliation: Department of Neurology, Academic Medical Center, Amsterdam, The Netherlands.|Department of Neurology, Haga Teaching Hospital, The Hague, The Netherlands.
authors.forename: M-F
authors.initials: MF
authors.lastname: Contarino
authors.affiliation: Istituto Clinico Humanitas and Università Cattolica del Sacro Cuore, Milan, Rozzano, Italy.
authors.forename: A
authors.identifier: http://orcid.org/0000-0002-5864-0006
authors.initials: A
authors.lastname: Albanese
authors.affiliation: Sobell Department of Motor Neuroscience and Movement Disorders, University College London (UCL) Institute of Neurology, London, UK.
authors.forename: K P
authors.initials: KP
authors.lastname: Bhatia
authors.affiliation: Department of Neurology, Faculty of Medicine, Transilvania University, Brasov, Romania.
authors.forename: C
authors.initials: C
authors.lastname: Falup-Pecurariu
authors.affiliation: Department of Pharmacology and Clinical Neuroscience, Umea University, Umea, Sweden.
authors.forename: L
authors.initials: L
authors.lastname: Forsgren
authors.affiliation: Department of Neurology, Medical University of Warsaw, Warszawa, Poland.
authors.forename: A
authors.initials: A
authors.lastname: Friedman
authors.affiliation: Neurological Institute, Tel Aviv Medical Center, Sacker School of Medicine, Sagol School of Neuroscience, Sieratzki Chair in Neurology, Tel Aviv University, Tel Aviv, Israel.
authors.forename: N
authors.initials: N
authors.lastname: Giladi
authors.affiliation: Department of Neurology, St Vincent's University Hospital, Dublin, Ireland.|School of Medicine and Medical Sciences, University College Dublin, Dublin, Ireland.
authors.forename: M
authors.initials: M
authors.lastname: Hutchinson
authors.affiliation: Neurology Clinic CCS, School of Medicine, University of Belgrade, Belgrade, Serbia.
authors.forename: V S
authors.initials: VS
authors.lastname: Kostic
authors.affiliation: Department of Neurosurgery, Hannover Medical School, Hannover, Germany.
authors.forename: J K
authors.initials: JK
authors.lastname: Krauss
authors.affiliation: Department of Neurology, Copenhagen University Hospital Bispebjerg, Copenhagen, Denmark.
authors.forename: A
authors.initials: A
authors.lastname: Lokkegaard
authors.affiliation: Parkinson Disease and Movement Disorders Unit, Neurology Service, Institut d'Investigatió Biomèdiques August Pi i Sunyer (IDIBAPS), Centro de Investigación Biomédica en Red sobre Enfermedades Neurodegenerativas (CIBERNED), Barcelona, Catalonia, Spain.
authors.forename: M J
authors.initials: MJ
authors.lastname: Marti
authors.affiliation: University Hospital for Neurology and Psychiatry 'St Naum', Sofia, Bulgaria.
authors.forename: I
authors.initials: I
authors.lastname: Milanov
authors.affiliation: Department of Neurology, University Medical Centre Ljubljana, Ljubljana, Slovenia.
authors.forename: Z
authors.initials: Z
authors.lastname: Pirtosek
authors.affiliation: Referral Center for Movement Disorders, Department of Neurology, University Hospital Center Zagreb, University of Zagreb, School of Medicine, Zagreb, Croatia.
authors.forename: M
authors.initials: M
authors.lastname: Relja
authors.affiliation: Department of Neurology, Safarik University, Kosice, Slovak Republic.|Department of Neurology, University Hospital of L. Pasteur, Kosice, Slovak Republic.
authors.forename: M
authors.initials: M
authors.lastname: Skorvanek
authors.affiliation: Second Department of Neurology, Attiko Hospital, University of Athens, Athens, Greece.|Department of Neurology, Philipps Universität, Marburg, Germany.
authors.forename: M
authors.initials: M
authors.lastname: Stamelou
authors.affiliation: Laboratory for Research in Rehabilitation, Riga Stradins University, Riga, Latvia.
authors.forename: A
authors.initials: A
authors.lastname: Stepens
authors.affiliation: Department of Neurology, Semmelweis University, Budapest, Hungary.
authors.forename: G
authors.initials: G
authors.lastname: Tamás
authors.affiliation: University Clinic of Neurology - Skopje, University 'St Cyril and Methodius', Skopje, Republic of Macedonia.
authors.forename: A
authors.initials: A
authors.lastname: Taravari
authors.affiliation: Department of Neurology, Haukeland University Hospital, Bergen, Norway.|Department of Clinical Medicine, University of Bergen, Bergen, Norway.
authors.forename: C
authors.initials: C
authors.lastname: Tzoulis
authors.affiliation: Department of Neurology, University Hospitals Leuven, Leuven, Belgium.
authors.forename: W
authors.initials: W
authors.lastname: Vandenberghe
authors.affiliation: APHP, Department of Neurology, Salpêtriere Hospital, Paris, France.|ICM (Brain and Spine Institute) UPMC/INSERM, UMR 1127, CNRS UMR7225, Pierre Marie Curie Paris-6 University, Paris, France.
authors.forename: M
authors.initials: M
authors.lastname: Vidailhet
authors.affiliation: Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Lisbon, Portugal.
authors.forename: J J
authors.initials: JJ
authors.lastname: Ferreira
authors.affiliation: Department of Neurology, University Medical Centre Groningen, Groningen, The Netherlands.
authors.forename: M A
authors.initials: MA
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mesh_terms: D020821:Dystonic Disorders / Q000188:drug therapy / Q000628:therapy*; D005062:European Union / Q000706:statistics & numerical data*; D058005:General Practitioners / Q000193:education / Q000706:statistics & numerical data*; D019538:Health Care Surveys / Q000706:statistics & numerical data; D006801:Humans; D009462:Neurology / Q000193:education / Q000706:statistics & numerical data*
keywords: Europe; dystonia; dystonia management; dystonia treatment; survey