Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes
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2016
Authors
Valadas, A.Contarino, M-F.
Albanese, A.
Bhatia, K. P.
Falup-Pecurariu, C.
Forsgren, L.
Friedman, A.
Giladi, N.
Hutchinson, M.
Kostic, V. S.
Krauss, J. K.
Lokkegaard, A.
Marti, M. J.
Milanov, I.
Pirtosek, Z.
Relja, M.
Skorvanek, M.
Stamelou, M.
Stepens, A.
Tamas, G.
Taravari, A.
Tzoulis, C.
Vandenberghe, W.
Vidailhet, M.
Ferreira, J. J.
Tijssen, M. A.
Article (Published version)
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Background and purposeDystonia 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. MethodsA 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. ResultsLack 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 o...f 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. ConclusionsInternationally, 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.
Keywords:
dystonia / dystonia management / dystonia treatment / Europe / surveySource:
European Journal of Neurology, 2016, 23, 4, 772-779Funding / projects:
- European Cooperation in Science and Technology (COST) Action [BM1101]
DOI: 10.1111/ene.12940
ISSN: 1351-5101; 1468-1331
PubMed: 26826067
WoS: 000372972300020
Scopus: 2-s2.0-84957991584
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VinčaTY - JOUR AU - Valadas, A. AU - Contarino, M-F. AU - Albanese, A. AU - Bhatia, K. P. AU - Falup-Pecurariu, C. AU - Forsgren, L. AU - Friedman, A. AU - Giladi, N. AU - Hutchinson, M. AU - Kostic, V. S. AU - Krauss, J. K. AU - Lokkegaard, A. AU - Marti, M. J. AU - Milanov, I. AU - Pirtosek, Z. AU - Relja, M. AU - Skorvanek, M. AU - Stamelou, M. AU - Stepens, A. AU - Tamas, G. AU - Taravari, A. AU - Tzoulis, C. AU - Vandenberghe, W. AU - Vidailhet, M. AU - Ferreira, J. J. AU - Tijssen, M. A. PY - 2016 UR - https://vinar.vin.bg.ac.rs/handle/123456789/986 AB - Background and purposeDystonia 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. MethodsA 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. ResultsLack 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. ConclusionsInternationally, 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. T2 - European Journal of Neurology T1 - Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes VL - 23 IS - 4 SP - 772 EP - 779 DO - 10.1111/ene.12940 ER -
@article{ author = "Valadas, A. and Contarino, M-F. and Albanese, A. and Bhatia, K. P. and Falup-Pecurariu, C. and Forsgren, L. and Friedman, A. and Giladi, N. and Hutchinson, M. and Kostic, V. S. and Krauss, J. K. and Lokkegaard, A. and Marti, M. J. and Milanov, I. and Pirtosek, Z. and Relja, M. and Skorvanek, M. and Stamelou, M. and Stepens, A. and Tamas, G. and Taravari, A. and Tzoulis, C. and Vandenberghe, W. and Vidailhet, M. and Ferreira, J. J. and Tijssen, M. A.", year = "2016", abstract = "Background and purposeDystonia 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. MethodsA 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. ResultsLack 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. ConclusionsInternationally, 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.", journal = "European Journal of Neurology", title = "Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes", volume = "23", number = "4", pages = "772-779", doi = "10.1111/ene.12940" }
Valadas, A., Contarino, M-F., Albanese, A., Bhatia, K. P., Falup-Pecurariu, C., Forsgren, L., Friedman, A., Giladi, N., Hutchinson, M., Kostic, V. S., Krauss, J. K., Lokkegaard, A., Marti, M. J., Milanov, I., Pirtosek, Z., Relja, M., Skorvanek, M., Stamelou, M., Stepens, A., Tamas, G., Taravari, A., Tzoulis, C., Vandenberghe, W., Vidailhet, M., Ferreira, J. J.,& Tijssen, M. A.. (2016). Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes. in European Journal of Neurology, 23(4), 772-779. https://doi.org/10.1111/ene.12940
Valadas A, Contarino M, Albanese A, Bhatia KP, Falup-Pecurariu C, Forsgren L, Friedman A, Giladi N, Hutchinson M, Kostic VS, Krauss JK, Lokkegaard A, Marti MJ, Milanov I, Pirtosek Z, Relja M, Skorvanek M, Stamelou M, Stepens A, Tamas G, Taravari A, Tzoulis C, Vandenberghe W, Vidailhet M, Ferreira JJ, Tijssen MA. Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes. in European Journal of Neurology. 2016;23(4):772-779. doi:10.1111/ene.12940 .
Valadas, A., Contarino, M-F., Albanese, A., Bhatia, K. P., Falup-Pecurariu, C., Forsgren, L., Friedman, A., Giladi, N., Hutchinson, M., Kostic, V. S., Krauss, J. K., Lokkegaard, A., Marti, M. J., Milanov, I., Pirtosek, Z., Relja, M., Skorvanek, M., Stamelou, M., Stepens, A., Tamas, G., Taravari, A., Tzoulis, C., Vandenberghe, W., Vidailhet, M., Ferreira, J. J., Tijssen, M. A., "Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes" in European Journal of Neurology, 23, no. 4 (2016):772-779, https://doi.org/10.1111/ene.12940 . .