Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes

Valadas A^1,2, Contarino MF^3,4, Albanese A⁵, Ainars S, Andrzej F, Arben T, Erro R, Forsgren L, Gertrúd T, Giladi N, Hutchinson M^11,12, Kostic VS, Kraus J, Lokkegaard A, Maja R, Marti MJ, Milanov I, Pirtosek Z, Skorvanek M, Tzoulis C, Vandenberghe W, Vidailhet M, Ferreira J, Tijssen M

Eur J Neurol. 2016 Apr;23(4):772-9. doi: 10.1111/ene.12940. Epub 2016 Jan 29

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1	Neurology Service, Hospital de São Bernardo, Centro Hospitalar de Setúbal, Setúbal, Portugal..
2	Clinical Research Unit, Institute of Molecular Medicine, Lisbon, Portugal..
3	Department of Neurology, Academic Medical Center, Amsterdam, The Netherlands.
4	Department of Neurology, Haga Teaching Hospital, The Hague, The Netherlands.
5	Istituto Clinico Humanitas and Università Cattolica del Sacro Cuore, Milan, Rozzano, Italy.
6	Sobell Department of Motor Neuroscience and Movement Disorders, University College London (UCL) Institute of Neurology, London, UK.
7	Department of Neurology, Faculty of Medicine, Transilvania University, Brasov, Romania.
8	Department of Pharmacology and Clinical Neuroscience, Umea University, Umea, Sweden.
9	Department of Neurology, Medical University of Warsaw, Warszawa, Poland.
10	Neurological Institute, Tel Aviv Medical Center, Sacker School of Medicine, Sagol School of Neuroscience, Sieratzki Chair in Neurology, Tel Aviv University, Tel Aviv, Israel.
11	Department of Neurology, St Vincent’s University Hospital, Dublin, Ireland.
12	School of Medicine and Medical Sciences, University College Dublin, Dublin, Ireland.
13	Neurology Clinic CCS, School of Medicine, University of Belgrade, Belgrade, Serbia.
14	Department of Neurosurgery, Hannover Medical School, Hannover, Germany.
15	Department of Neurology, Copenhagen University Hospital Bispebjerg, Copenhagen, Denmark.
16	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.
17	University Hospital for Neurology and Psychiatry ‘St Naum’, Sofia, Bulgaria.
18	Department of Neurology, University Medical Centre Ljubljana, Ljubljana, Slovenia.
19	Referral Center for Movement Disorders, Department of Neurology, University Hospital Center Zagreb, University of Zagreb, School of Medicine, Zagreb, Croatia.
20	Department of Neurology, University Hospital of L. Pasteur, Kosice, Slovak Republic.
21	Department of Neurology, University Hospital of L. Pasteur, Kosice, Slovak Republic.
22	Second Department of Neurology, Attiko Hospital, University of Athens, Athens, Greece.
23	Department of Neurology, Philipps Universität, Marburg, Germany.
24	Laboratory for Research in Rehabilitation, Riga Stradins University, Riga, Latvia.
25	Department of Neurology, Semmelweis University, Budapest, Hungary.
26	University Clinic of Neurology – Skopje, University ‘St Cyril and Methodius’, Skopje, Republic of Macedonia.
27	Department of Neurology, Haukeland University Hospital, Bergen, Norway.
28	Department of Clinical Medicine, University of Bergen, Bergen, Norway.
29	Department of Neurology, University Hospitals Leuven, Leuven, Belgium.
30	APHP, Department of Neurology, Salpêtriere Hospital, Paris, France.
31	ICM (Brain and Spine Institute) UPMC/INSERM, UMR 1127, CNRS UMR7225, Pierre Marie Curie Paris-6 University, Paris, France.
32	Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Lisbon, Portugal.
33	Department of Neurology, University Medical Centre Groningen, Groningen, The Netherlands.

ABSTRACT:

Background and purpose:

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.

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