A Valadas1,2, M-F Contarino3,4, A Albanese5, K P Bhatia6, C Falup-Pecurariu7, L Forsgren8, A Friedman9, N Giladi10, M Hutchinson11,12, V S Kostic13, J K Krauss14, A Lokkegaard15, M J Marti16, I Milanov17, Z Pirtosek18, M Relja19, M Skorvanek20,21, M Stamelou22,23, A Stepens24, G Tamás25, A Taravari26, C Tzoulis27,28, W Vandenberghe29, M Vidailhet30,31, J J Ferreira32, M A Tijssen33. 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, Safarik University, 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. 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.
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. 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 dystoniapatients could provide the basis for improving all aspects of dystonia management across Europe.
Authors: C Painous; N J H van Os; A Delamarre; I Michailoviene; M J Marti; B P van de Warrenburg; W G Meissner; A Utkus; C Reinhard; H Graessner; M A Tijssen Journal: Eur J Neurol Date: 2020-06-19 Impact factor: 6.089
Authors: Marenka Smit; Alberto Albanese; Monika Benson; Mark J Edwards; Holm Graessner; Michael Hutchinson; Robert Jech; Joachim K Krauss; Francesca Morgante; Belen Pérez Dueñas; Richard B Reilly; Michele Tinazzi; Maria Fiorella Contarino; Marina A J Tijssen Journal: Front Neurol Date: 2021-06-03 Impact factor: 4.003