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

Identifieur interne : 000165 ( PubMed/Corpus ); précédent : 000164; suivant : 000166

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

Auteurs : A. Valadas ; M-F Contarino ; A. Albanese ; K P Bhatia ; C. Falup-Pecurariu ; L. Forsgren ; A. Friedman ; N. Giladi ; M. Hutchinson ; V S Kostic ; J K Krauss ; A. Lokkegaard ; M J Marti ; I. Milanov ; Z. Pirtosek ; M. Relja ; M. Skorvanek ; M. Stamelou ; A. Stepens ; G. Tamás ; A. Taravari ; C. Tzoulis ; W. Vandenberghe ; M. Vidailhet ; J J Ferreira ; M A Tijssen

Source :

RBID : pubmed:26826067

English descriptors

Abstract

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.

DOI: 10.1111/ene.12940
PubMed: 26826067

Links to Exploration step

pubmed:26826067

Le document en format XML

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<name sortKey="Milanov, I" sort="Milanov, I" uniqKey="Milanov I" first="I" last="Milanov">I. Milanov</name>
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<name sortKey="Relja, M" sort="Relja, M" uniqKey="Relja M" first="M" last="Relja">M. Relja</name>
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<name sortKey="Stepens, A" sort="Stepens, A" uniqKey="Stepens A" first="A" last="Stepens">A. Stepens</name>
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<name sortKey="Tamas, G" sort="Tamas, G" uniqKey="Tamas G" first="G" last="Tamás">G. Tamás</name>
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<nlm:affiliation>Department of Neurology, Semmelweis University, Budapest, Hungary.</nlm:affiliation>
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<name sortKey="Krauss, J K" sort="Krauss, J K" uniqKey="Krauss J" first="J K" last="Krauss">J K Krauss</name>
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<nlm:affiliation>Department of Neurosurgery, Hannover Medical School, Hannover, Germany.</nlm:affiliation>
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<name sortKey="Lokkegaard, A" sort="Lokkegaard, A" uniqKey="Lokkegaard A" first="A" last="Lokkegaard">A. Lokkegaard</name>
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<nlm:affiliation>Department of Neurology, Copenhagen University Hospital Bispebjerg, Copenhagen, Denmark.</nlm:affiliation>
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<name sortKey="Marti, M J" sort="Marti, M J" uniqKey="Marti M" first="M J" last="Marti">M J Marti</name>
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<nlm: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.</nlm:affiliation>
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<name sortKey="Milanov, I" sort="Milanov, I" uniqKey="Milanov I" first="I" last="Milanov">I. Milanov</name>
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<nlm:affiliation>University Hospital for Neurology and Psychiatry 'St Naum', Sofia, Bulgaria.</nlm:affiliation>
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<name sortKey="Pirtosek, Z" sort="Pirtosek, Z" uniqKey="Pirtosek Z" first="Z" last="Pirtosek">Z. Pirtosek</name>
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<nlm:affiliation>Department of Neurology, University Medical Centre Ljubljana, Ljubljana, Slovenia.</nlm:affiliation>
</affiliation>
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<name sortKey="Relja, M" sort="Relja, M" uniqKey="Relja M" first="M" last="Relja">M. Relja</name>
<affiliation>
<nlm:affiliation>Referral Center for Movement Disorders, Department of Neurology, University Hospital Center Zagreb, University of Zagreb, School of Medicine, Zagreb, Croatia.</nlm:affiliation>
</affiliation>
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<name sortKey="Skorvanek, M" sort="Skorvanek, M" uniqKey="Skorvanek M" first="M" last="Skorvanek">M. Skorvanek</name>
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<nlm:affiliation>Department of Neurology, Safarik University, Kosice, Slovak Republic.</nlm:affiliation>
</affiliation>
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<name sortKey="Stamelou, M" sort="Stamelou, M" uniqKey="Stamelou M" first="M" last="Stamelou">M. Stamelou</name>
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<nlm:affiliation>Second Department of Neurology, Attiko Hospital, University of Athens, Athens, Greece.</nlm:affiliation>
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<name sortKey="Stepens, A" sort="Stepens, A" uniqKey="Stepens A" first="A" last="Stepens">A. Stepens</name>
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<name sortKey="Tamas, G" sort="Tamas, G" uniqKey="Tamas G" first="G" last="Tamás">G. Tamás</name>
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<nlm:affiliation>Department of Neurology, Haukeland University Hospital, Bergen, Norway.</nlm:affiliation>
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<nlm:affiliation>Department of Neurology, University Hospitals Leuven, Leuven, Belgium.</nlm:affiliation>
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<name sortKey="Vidailhet, M" sort="Vidailhet, M" uniqKey="Vidailhet M" first="M" last="Vidailhet">M. Vidailhet</name>
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<nlm:affiliation>APHP, Department of Neurology, Salpêtriere Hospital, Paris, France.</nlm:affiliation>
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<front>
<div type="abstract" xml:lang="en">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.</div>
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<DateCreated>
<Year>2016</Year>
<Month>03</Month>
<Day>22</Day>
</DateCreated>
<DateCompleted>
<Year>2016</Year>
<Month>12</Month>
<Day>13</Day>
</DateCompleted>
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<Year>2016</Year>
<Month>12</Month>
<Day>30</Day>
</DateRevised>
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<Journal>
<ISSN IssnType="Electronic">1468-1331</ISSN>
<JournalIssue CitedMedium="Internet">
<Volume>23</Volume>
<Issue>4</Issue>
<PubDate>
<Year>2016</Year>
<Month>Apr</Month>
</PubDate>
</JournalIssue>
<Title>European journal of neurology</Title>
<ISOAbbreviation>Eur. J. Neurol.</ISOAbbreviation>
</Journal>
<ArticleTitle>Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes.</ArticleTitle>
<Pagination>
<MedlinePgn>772-9</MedlinePgn>
</Pagination>
<ELocationID EIdType="doi" ValidYN="Y">10.1111/ene.12940</ELocationID>
<Abstract>
<AbstractText Label="BACKGROUND AND PURPOSE" NlmCategory="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.</AbstractText>
<AbstractText Label="METHODS" NlmCategory="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.</AbstractText>
<AbstractText Label="RESULTS" NlmCategory="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.</AbstractText>
<AbstractText Label="CONCLUSIONS" NlmCategory="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.</AbstractText>
<CopyrightInformation>© 2016 EAN.</CopyrightInformation>
</Abstract>
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<Author ValidYN="Y">
<LastName>Valadas</LastName>
<ForeName>A</ForeName>
<Initials>A</Initials>
<AffiliationInfo>
<Affiliation>Neurology Service, Hospital de São Bernardo, Centro Hospitalar de Setúbal, Setúbal, Portugal.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>Clinical Research Unit, Institute of Molecular Medicine, Lisbon, Portugal.</Affiliation>
</AffiliationInfo>
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<LastName>Contarino</LastName>
<ForeName>M-F</ForeName>
<Initials>MF</Initials>
<AffiliationInfo>
<Affiliation>Department of Neurology, Academic Medical Center, Amsterdam, The Netherlands.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>Department of Neurology, Haga Teaching Hospital, The Hague, The Netherlands.</Affiliation>
</AffiliationInfo>
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<LastName>Albanese</LastName>
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<AffiliationInfo>
<Affiliation>Istituto Clinico Humanitas and Università Cattolica del Sacro Cuore, Milan, Rozzano, Italy.</Affiliation>
</AffiliationInfo>
</Author>
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