First international workshop on rehabilitation management and clinical outcome measures for spinal muscular atrophy
Montes, Jacqueline; Young, Sally Dunaway; Mazzone, Elena; Main, Marion; Bartels, Bart; Civitello, Matthew; Coratti, Giorgia; Young, Sally Dunaway; Duong, Tina; Estilow, Timothy; Gee, Richard; Glanzman, Allan M.; Kitsuwa-Lowe, Janis; Main, Marion; Mayhew, Anna; Mazzone, Elena; Mirek, Elizabeth; Montes, Jacqueline; Lofra, Robert Muni; Pandya, Shree; Pasternak, Amy; Ramsey, Danielle; Salazar, Rachel; Turner, Jenna; Wells, Julie; International Spinal Muscular Atrophy Consortium Clinical Evaluator Working Group
(2017) Neuromuscular Disorders, volume 27, issue 10, pp. 964 - 969
(Article)
Abstract
Twenty-one physical and occupational therapists from the USA and Europe (Italy, United Kingdom and Netherlands) met in Dallas, Texas USA on October 16 and 17, 2016. The purpose of this meeting was to review the current landscape of rehabilitation management and clinical outcome measures for spinal muscular atrophy (SMA). The
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workshop was organized into three sessions entitled: (1) Rehabilitation and Musculoskeletal Considerations; (2) SMA Clinical Outcome Measures; and (3) Rehabilitation Devices for Evaluation and Treatment. A closing session was included to summarize the meeting topics, next steps and proposed action items.
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Keywords: Pediatrics, Perinatology, and Child Health, Neurology, Clinical Neurology, Genetics(clinical), Journal Article
ISSN: 0960-8966
Publisher: Elsevier Limited
Note: Funding Information: This meeting was made possible thanks to the support from Ionis Pharmaceuticals and Biogen. We would like to thank INC for their assistance coordinating the meeting and the Pediatric Neuromuscular Clinical Research Network (PNCRN), Italian SMA Network, and SMA Reach UK.
(Peer reviewed)