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dc.contributorVall d'Hebron Barcelona Hospital Campus
dc.contributor.authorSmit, Marenka
dc.contributor.authorAlbanese, Alberto
dc.contributor.authorBenson, Monika
dc.contributor.authorEdwards, Mark J.
dc.contributor.authorGraessner, Holm
dc.contributor.authorHutchinson, Michael
dc.contributor.authorPerez Dueñas, Belen
dc.date.accessioned2022-03-21T08:53:20Z
dc.date.available2022-03-21T08:53:20Z
dc.date.issued2021-06
dc.identifier.citationSmit M, Albanese A, Benson M, Edwards MJ, Graessner H, Hutchinson M, et al. Dystonia Management: What to Expect From the Future? The Perspectives of Patients and Clinicians Within DystoniaNet Europe. Front Neurol. 2021 Jun;12:646841.
dc.identifier.issn1664-2295
dc.identifier.urihttp://hdl.handle.net/11351/7212
dc.descriptionDystoniaNet; European network; Dystonia
dc.description.abstractImproved care for people with dystonia presents a number of challenges. Major gaps in knowledge exist with regard to how to optimize the diagnostic process, how to leverage discoveries in pathophysiology into biomarkers, and how to develop an evidence base for current and novel treatments. These challenges are made greater by the realization of the wide spectrum of symptoms and difficulties faced by people with dystonia, which go well-beyond motor symptoms. A network of clinicians, scientists, and patients could provide resources to facilitate information exchange at different levels, share mutual experiences, and support each other's innovative projects. In the past, collaborative initiatives have been launched, including the American Dystonia Coalition, the European Cooperation in Science and Technology (COST—which however only existed for a limited time), and the Dutch DystonieNet project. The European Reference Network on Rare Neurological Diseases includes dystonia among other rare conditions affecting the central nervous system in a dedicated stream. Currently, we aim to broaden the scope of these initiatives to a comprehensive European level by further expanding the DystoniaNet network, in close collaboration with the ERN-RND. In line with the ERN-RND, the mission of DystoniaNet Europe is to improve care and quality of life for people with dystonia by, among other endeavors, facilitating access to specialized care, overcoming the disparity in education of medical professionals, and serving as a solid platform to foster international clinical and research collaborations. In this review, both professionals within the dystonia field and patients and caregivers representing Dystonia Europe highlight important unsolved issues and promising new strategies and the role that a European network can play in activating them.
dc.language.isoeng
dc.publisherFrontiers Media
dc.relation.ispartofseriesFrontiers in Neurology;12
dc.rightsAttribution 4.0 International
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/
dc.sourceScientia
dc.subjectDistonia - Diagnòstic
dc.subjectQualitat de vida - Avaluació
dc.subjectMalalties rares
dc.subject.meshDystonia
dc.subject.mesh/diagnosis
dc.subject.meshQuality of Life
dc.subject.meshRare Diseases
dc.titleDystonia Management: What to Expect From the Future? The Perspectives of Patients and Clinicians Within DystoniaNet Europe
dc.typeinfo:eu-repo/semantics/article
dc.identifier.doi10.3389/fneur.2021.646841
dc.subject.decsdistonía
dc.subject.decs/diagnóstico
dc.subject.decscalidad de vida
dc.subject.decsenfermedades raras
dc.relation.publishversionhttps://doi.org/10.3389/fneur.2021.646841
dc.type.versioninfo:eu-repo/semantics/publishedVersion
dc.audienceProfessionals
dc.contributor.organismesInstitut Català de la Salut
dc.contributor.authoraffiliation[Smit M] Expertise Centre Movement Disorders Groningen, Department of Neurology, University Medical Centre Groningen, Groningen, Netherlands. [Albanese A] Department of Neurology, Istituto di Ricovero e Cura a Carattere Scientifico Humanitas Research Hospital, Milan, Italy. [Benson M] Dystonia Europe, Brussels, Belgium. [Edwards MJ] Neuroscience Research Centre, Institute of Molecular and Clinical Sciences, St George's University of London, London, United Kingdom. [Graessner H] Institute of Medical Genetics and Applied Genomics and Centre for Rare Diseases, University of Tübingen, Tübingen, Germany. [Hutchinson M] Department of Neurology, St. Vincent's University Hospital, Dublin, Ireland. [Pérez Dueñas B] Grup de Recerca en Neurologia Pediàtrica, Vall d'Hebron Hospital Universitari, Barcelona, Spain. Vall d’Hebron Institut de Recerca (VHIR), Barcelona, Spain
dc.identifier.pmid34149592
dc.identifier.wos000662183800001
dc.rights.accessrightsinfo:eu-repo/semantics/openAccess


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