Multidisciplinary management and care in rare neuromuscular disorders: A call for action
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Published in | European journal of neurology Vol. 31; no. 6; pp. e16265 - n/a |
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Main Authors | , , , , |
Format | Journal Article |
Language | English |
Published |
England
John Wiley & Sons, Inc
01.06.2024
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Subjects | |
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Author | Fossmo, Hanne Ludt Ørstavik, Kristin Nordstrøm, Marianne Rosenberger, Andreas Dybesland Visser, Marianne |
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Author_xml | – sequence: 1 givenname: Kristin orcidid: 0000-0001-7900-7093 surname: Ørstavik fullname: Ørstavik, Kristin email: krorstav@ous‐hf.no organization: Oslo University Hospital – sequence: 2 givenname: Andreas Dybesland surname: Rosenberger fullname: Rosenberger, Andreas Dybesland organization: University Hospital of North Norway – sequence: 3 givenname: Hanne Ludt surname: Fossmo fullname: Fossmo, Hanne Ludt organization: Vikersund Rehabilitation Centre – sequence: 4 givenname: Marianne surname: Nordstrøm fullname: Nordstrøm, Marianne organization: Frambu Resource Centre for Rare Disorders – sequence: 5 givenname: Marianne orcidid: 0000-0002-5591-7452 surname: Visser fullname: Visser, Marianne organization: Location University of Amsterdam |
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Cites_doi | 10.1080/21678421.2017.1349151 10.1016/j.nmd.2021.03.007 10.1016/S1474-4422(18)30203-5 10.1186/s13023-020-01593-4 10.1212/CPJ.0000000000000531 10.1002/mus.25725 10.3233/JND-210670 10.3233/JND-190424 10.1016/S1474-4422(09)70272-8 10.1016/j.nmd.2017.11.005 |
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Copyright | 2024 The Authors. published by John Wiley & Sons Ltd on behalf of European Academy of Neurology. 2024. This article is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. |
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References | 2021; 8 2020; 7 2021; 16 2018; 28 2018; 8 2018; 17 2017; 18 2021; 31 2010; 9 2017; 56 e_1_2_6_9_1 e_1_2_6_8_1 e_1_2_6_5_1 e_1_2_6_4_1 e_1_2_6_10_1 e_1_2_6_7_1 e_1_2_6_6_1 e_1_2_6_3_1 e_1_2_6_11_1 e_1_2_6_2_1 |
References_xml | – volume: 56 start-page: 848 year: 2017 end-page: 858 article-title: Developing multidisciplinary clinics for neuromuscular care and research publication-title: Muscle Nerve – volume: 28 start-page: 103 year: 2018 end-page: 115 article-title: Diagnosis and management of spinal muscular atrophy: part 1: recommendations for diagnosis, rehabilitation, orthopedic and nutritional care publication-title: Neuromuscul Disord – volume: 9 start-page: 177 year: 2010 end-page: 189 article-title: Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care publication-title: Lancet Neurol – volume: 18 start-page: 569 year: 2017 end-page: 575 article-title: The benefit of evolving multidisciplinary care in ALS: a diagnostic cohort survival comparison publication-title: Amyotroph Lateral Scler Frontotemporal Degener – volume: 17 start-page: 671 year: 2018 end-page: 680 article-title: Cognitive behavioural therapy with optional graded exercise therapy in patients with severe fatigue with myotonic dystrophy type 1: a multicentre, single‐blind, randomised trial publication-title: Lancet Neurol – volume: 7 start-page: 1 year: 2020 end-page: 13 article-title: Advances in treatment of spinal muscular atrophy – new phenotypes, new challenges, new implications for care publication-title: J Neuromuscul Dis – volume: 16 start-page: 78 year: 2021 article-title: Do we always need to treat patients with spinal muscular atrophy? A personal view and experience publication-title: Orphanet J Rare Dis – volume: 8 start-page: 507 year: 2018 end-page: 520 article-title: Consensus‐based care recommendations for adults with myotonic dystrophy type 1 publication-title: Neurol Clin Pract – volume: 8 start-page: 927 year: 2021 end-page: 938 article-title: Compliance to DMD care considerations in The Netherlands publication-title: J Neuromuscul Dis – volume: 31 start-page: 574 year: 2021 end-page: 582 article-title: Newborn screening programs for spinal muscular atrophy worldwide: where we stand and where to go publication-title: Neuromuscul Disord – ident: e_1_2_6_7_1 doi: 10.1080/21678421.2017.1349151 – ident: e_1_2_6_8_1 doi: 10.1016/j.nmd.2021.03.007 – ident: e_1_2_6_11_1 doi: 10.1016/S1474-4422(18)30203-5 – ident: e_1_2_6_10_1 doi: 10.1186/s13023-020-01593-4 – ident: e_1_2_6_3_1 doi: 10.1212/CPJ.0000000000000531 – ident: e_1_2_6_5_1 doi: 10.1002/mus.25725 – ident: e_1_2_6_6_1 doi: 10.3233/JND-210670 – ident: e_1_2_6_9_1 doi: 10.3233/JND-190424 – ident: e_1_2_6_4_1 doi: 10.1016/S1474-4422(09)70272-8 – ident: e_1_2_6_2_1 doi: 10.1016/j.nmd.2017.11.005 |
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SubjectTerms | Disease Management Humans Neuromuscular diseases Neuromuscular Diseases - therapy Patient Care Team Rare Diseases - therapy |
Title | Multidisciplinary management and care in rare neuromuscular disorders: A call for action |
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