Understanding the relationship between the 32-item motor function measure and daily activities from an individual with spinal muscular atrophy and their caregivers' perspective: a two-part study.

Duong, Tina; Braid, Jessica; Staunton, Hannah; Barriere, Aurelie; Petridis, Fani; Reithinger, Johannes; Cruz, Rosangel; Jarecki, Jill; De Lemus, Mencia; Gusset, Nicole; Broekgaarden, Ria; Randhawa, Sharan; Flynn, Jessica; Arbuckle, Rob; Reif, Sonia; Yang, Lida; De Martini, Angela; Vuillerot, Carole

Duong, Tina; Braid, Jessica; Staunton, Hannah; Barriere, Aurelie; Petridis, Fani; Reithinger, Johannes; Cruz, Rosangel; Jarecki, Jill; De Lemus, Mencia; Gusset, Nicole; Broekgaarden, Ria; Randhawa, Sharan; Flynn, Jessica; Arbuckle, Rob; Reif, Sonia; Yang, Lida; De Martini, Angela; Vuillerot, Carole.

Affiliation

Duong T; Department of Neurology and Neurological Sciences, Stanford University, Stanford, CA, USA.
Braid J; Roche Products Limited, Welwyn Garden City, UK. Jessica.Braid@roche.com.
Staunton H; Roche Products Limited, Welwyn Garden City, UK.
Barriere A; Department of Pediatric Physical Medicine and Rehabilitation, Hôpital Mère Enfant, CHU-Lyon, Lyon University, Lyon, France.
Petridis F; F. Hoffmann-La Roche Ltd, Basel, Switzerland.
Reithinger J; F. Hoffmann-La Roche Ltd, Basel, Switzerland.
Cruz R; CureSMA, Elk Grove Village, IL, USA.
Jarecki J; CureSMA, Elk Grove Village, IL, USA.
De Lemus M; SMA Europe Freiburg, Freiburg, Germany.
Gusset N; FundAME, Madrid, Spain.
Broekgaarden R; SMA Europe Freiburg, Freiburg, Germany.
Randhawa S; SMA Schweiz, Swiss Patient Organisation for Spinal Muscular Atrophy, Heimberg, Switzerland.
Flynn J; SMA Europe Freiburg, Freiburg, Germany.
Arbuckle R; SMA Europe and Vereniging Spierziekten Nederland, Baarn, The Netherlands.
Reif S; Adelphi Values, Patient-Centered Outcomes, Adelphi Mill, Bollington, Cheshire, UK.
Yang L; Adelphi Values, Patient-Centered Outcomes, Adelphi Mill, Bollington, Cheshire, UK.
De Martini A; Adelphi Values, Patient-Centered Outcomes, Adelphi Mill, Bollington, Cheshire, UK.
Vuillerot C; Charles River Associates Inc, Zurich, Switzerland.

BMC Neurol ; 21(1): 143, 2021 Mar 31.

Article de En | MEDLINE | ID: mdl-33789607

Sujet(s)
Mots clés

32-item motor function measure; Clinical meaningfulness; Content validity; Patient relevance; Qualitative interviews; Quantitative online survey; Spinal muscular atrophy

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Texte intégral: 1 Collection: 01-internacional Base de données: MEDLINE Sujet principal: Indice de gravité de la maladie / Activités de la vie quotidienne / Amyotrophie spinale Type d'étude: Diagnostic_studies / Evaluation_studies / Qualitative_research Limites: Adult / Female / Humans / Male Langue: En Journal: BMC Neurol Sujet du journal: NEUROLOGIA Année: 2021 Type de document: Article Pays d'affiliation: États-Unis d'Amérique

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