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Despite these advances, the use of therapies and changes in disease management strategies have focused on pediatric populations, leaving adults living with SMA, and those transitioning into adulthood, relatively neglected. Through a multi-faceted approach that gathered unbiased perspectives from clinical experts, validated insights from individuals with lived experiences, and substantiated findings with evidence from the literature, we have exposed unmet needs that are hindering the field and, ultimately, impacting care and quality of life for adults living with SMA. Here, we set new aspirations and calls to action to inspire continued research in this field, stimulate dialogue across the SMA community and inform policies that deliver effective management and care throughout an adult\u2019s journey living with SMA.<\/jats:p>","DOI":"10.3233\/jnd-200611","type":"journal-article","created":{"date-parts":[[2021,2,26]],"date-time":"2021-02-26T12:32:41Z","timestamp":1614342761000},"page":"543-551","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":26,"title":["Improving Care and Empowering Adults Living with SMA: A Call to Action in the New Treatment Era"],"prefix":"10.1177","volume":"8","author":[{"given":"Maggie C.","family":"Walter","sequence":"first","affiliation":[{"name":"Friedrich-Baur-Institute, Department of Neurology, Ludwig-Maximilians-University of Munich, Munich, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia","family":"Chiriboga","sequence":"additional","affiliation":[{"name":"Department of Neurology, Columbia University Irving Medical Center, New York, NY, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tina","family":"Duong","sequence":"additional","affiliation":[{"name":"Stanford University, Stanford, CA, United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nathalie","family":"Goemans","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, University of Leuven, University Hospitals Leuven, Leuven, Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Mayhew","sequence":"additional","affiliation":[{"name":"Newcastle University Translational and Clinical Research Institute, Newcastle upon Tyne, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"La\u00ebtitia","family":"Ouillade","sequence":"additional","affiliation":[{"name":"AFM T\u00e9l\u00e9thon, European Patients\u2019 Forum Young Patient"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maryam","family":"Oskoui","sequence":"additional","affiliation":[{"name":"Departments of Pediatrics and Neurology, McGill University, Montreal, QC, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ros","family":"Quinlivan","sequence":"additional","affiliation":[{"name":"MRC Centre for Neuromuscular Diseases, UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Juan F.","family":"V\u00e1zquez-Costa","sequence":"additional","affiliation":[{"name":"Motor Neuron Disease Unit, Department of Neurology, Hospital Universitario y Polit\u00e9cnico La Fe, Valencia, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Vissing","sequence":"additional","affiliation":[{"name":"Copenhagen Neuromuscular Center, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laurent","family":"Servais","sequence":"additional","affiliation":[{"name":"MDUK Neuromuscular Center, Department of Paediatrics, University of Oxford, Oxford, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2021,2,24]]},"reference":[{"key":"ref001","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1702752"},{"key":"ref002","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-019-1052-2"},{"key":"ref003","doi-asserted-by":"publisher","DOI":"10.1002\/mus.26769"},{"key":"ref004","doi-asserted-by":"publisher","DOI":"10.1007\/s40271-020-00415-w"},{"key":"ref005","doi-asserted-by":"publisher","DOI":"10.1016\/j.rmed.2018.01.012"},{"key":"ref006","unstructured":"INF23-A-Adapt-web.pdf. 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