首页> Journal of the neurological sciences> Development of the SMA independence scale-upper limb module (SMAIS-ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA.

Development of the SMA independence scale-upper limb module (SMAIS-ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA.

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第一作者： Dylan,Trundell

第一单位： Roche Products Ltd, Hexagon Place, 6 Falcon Way, Shire Park, Welwyn Garden City, AL7 1TW, UK. Electronic address: dylan.trundell@roche.com.

作者： Dylan,Trundell ^[1] ; Anne,Skalicky ^[2] ; Hannah,Staunton ^[3] ; Asha,Hareendran ^[4] ; Stephanie,Le Scouiller ^[5] ; Louise,Barrett ^[6] ; Owen,Cooper ^[7] ; Ksenija,Gorni ^[8] ; Tim,Seabrook ^[9] ; Sangeeta,Jethwa ^[10] ; Stefan,Cano ^[11]

作者单位： Roche Products Ltd, Hexagon Place, 6 Falcon Way, Shire Park, Welwyn Garden City, AL7 1TW, UK. Electronic address: dylan.trundell@roche.com. ^[1] Evidera, Broderick Building, 615 2nd Ave., Suite 500, Seattle, WA 98104, USA. Electronic address: anne.skalicky@evidera.com. ^[2] Roche Products Ltd, Hexagon Place, 6 Falcon Way, Shire Park, Welwyn Garden City, AL7 1TW, UK. Electronic address: hannah.staunton@roche.com. ^[3] Evidera, The Ark, 201 Talgarth Rd, Hammersmith, London, W6 8BJ, UK. Electronic address: asha.hareendran@evidera.com. ^[4] Roche Products Ltd, Hexagon Place, 6 Falcon Way, Shire Park, Welwyn Garden City, AL7 1TW, UK. Electronic address: stephanie.le_scouiller@roche.com. ^[5] Modus Outcomes, Suite 210b, Spirella Building, Letchworth Garden City, SG6 4ET, UK. Electronic address: louise.barrett@modusoutcomes.com. ^[6] Evidera, The Ark, 201 Talgarth Rd, Hammersmith, London, W6 8BJ, UK. Electronic address: owen.cooper@evidera.com. ^[7] PDMA Neuroscience and Rare Disease, F. Hoffmann-La Roche Ltd, 4070 Basel, Switzerland. Electronic address: ksenija.gorni@roche.com. ^[8] Roche Pharmaceutical Research and Early Development, Roche Innovation Center Basel, Basel, Switzerland. Electronic address: seabrooktim@hotmail.com. ^[9] Roche Pharmaceutical Research and Early Development, Roche Innovation Center Basel, Basel, Switzerland. Electronic address: sangeeta.jethwa@gmail.com. ^[10] Modus Outcomes, Suite 210b, Spirella Building, Letchworth Garden City, SG6 4ET, UK. Electronic address: stefan.cano@modusoutcomes.com. ^[11]

关键词 Observer-reported outcomes Patient-reported outcomes Psychometrics Qualitative methods Rasch measurement theory Spinal muscular atrophy

医学主题词横断面研究(Cross-Sectional Studies);人类(Humans);心理测定学(Psychometrics);生活质量(Quality of Life);结果可重复性(Reproducibility of Results);儿童脊髓性肌萎缩(Spinal Muscular Atrophies of Childhood);上肢(Upper Extremity)

DOI 10.1016/j.jns.2021.120059

PMID 34896922

发布时间 2022-01-28

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