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Building capacity for patient-engagement in neuromuscular disease research: A network project.

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Title: Building capacity for patient-engagement in neuromuscular disease research: A network project.
Authors: Mortenson P; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.; Department of Occupational Science & Occupational Therapy, University of British Columbia, Vancouver, Canada.; Department of Occupational Therapy, British Columbia Children's Hospital, Vancouver, Canada., Osman H; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.; Muscular Dystrophy Canada, Toronto, Canada., Beattie E; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada., Kagan C; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada., Larocca V; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.; Muscular Dystrophy Canada, Toronto, Canada., Maltais C; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada., Niksic L; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada., Thompson M; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada., Selby K; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.; Division of Neurology, British Columbia Children's Hospital, Vancouver, Canada.; Faculty of Medicine, Department of Pediatrics, University of British Columbia, Vancouver, Canada.
Source: Journal of neuromuscular diseases [J Neuromuscul Dis] 2026 May; Vol. 13 (3), pp. 462-473. Date of Electronic Publication: 2025 Dec 16.
Publication Type: Journal Article
Journal Info: Publisher: IOS Press Country of Publication: United States NLM ID: 101649948 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2214-3602 (Electronic) Linking ISSN: 22143599 NLM ISO Abbreviation: J Neuromuscul Dis Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: Building capacity for patient-engagement in neuromuscular disease research: A network project.
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  Data: <searchLink fieldCode="AU" term="%22Mortenson+P%22">Mortenson P</searchLink>; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.; Department of Occupational Science & Occupational Therapy, University of British Columbia, Vancouver, Canada.; Department of Occupational Therapy, British Columbia Children's Hospital, Vancouver, Canada.<br /><searchLink fieldCode="AU" term="%22Osman+H%22">Osman H</searchLink>; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.; Muscular Dystrophy Canada, Toronto, Canada.<br /><searchLink fieldCode="AU" term="%22Beattie+E%22">Beattie E</searchLink>; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.<br /><searchLink fieldCode="AU" term="%22Kagan+C%22">Kagan C</searchLink>; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.<br /><searchLink fieldCode="AU" term="%22Larocca+V%22">Larocca V</searchLink>; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.; Muscular Dystrophy Canada, Toronto, Canada.<br /><searchLink fieldCode="AU" term="%22Maltais+C%22">Maltais C</searchLink>; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.<br /><searchLink fieldCode="AU" term="%22Niksic+L%22">Niksic L</searchLink>; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.<br /><searchLink fieldCode="AU" term="%22Thompson+M%22">Thompson M</searchLink>; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.<br /><searchLink fieldCode="AU" term="%22Selby+K%22">Selby K</searchLink>; Neuromuscular Disease Network for Canada, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada.; Division of Neurology, British Columbia Children's Hospital, Vancouver, Canada.; Faculty of Medicine, Department of Pediatrics, University of British Columbia, Vancouver, Canada.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22IOS+Press%22">IOS Press </searchLink><i>Country of Publication: </i>United States <i>NLM ID: </i>101649948 <i>Publication Model: </i>Print-Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>2214-3602 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2222143599%22">22143599 </searchLink><i>NLM ISO Abbreviation: </i>J Neuromuscul Dis <i>Subsets: </i>MEDLINE
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        Value: 10.1177/22143602251405819
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      – Code: eng
        Text: English
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        StartPage: 462
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              M: 05
              Text: 2026 May
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