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Measuring What Matters to Individuals with Angelman Syndrome and Their Families: Development of a Patient-Centered Disease Concept Model.

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Title: Measuring What Matters to Individuals with Angelman Syndrome and Their Families: Development of a Patient-Centered Disease Concept Model.
Authors: Willgoss T; Roche Products Limited, Hexagon Place, 6 Falcon Way, Shire Park, Welwyn Garden City, AL7 1TW, UK. tom.willgoss@roche.com., Cassater D; Roche Innovation Center Basel, F. Hoffmann-La Roche Ltd, Basel, Switzerland., Connor S; Roche Products Limited, Hexagon Place, 6 Falcon Way, Shire Park, Welwyn Garden City, AL7 1TW, UK., Krishnan ML; Roche Innovation Center Basel, F. Hoffmann-La Roche Ltd, Basel, Switzerland., Miller MT; Roche Innovation Center Basel, F. Hoffmann-La Roche Ltd, Basel, Switzerland., Dias-Barbosa C; Evidera, Hammersmith, London, UK., Phillips D; Division of Physical Therapy, School of Medicine, University of North Carolina, Chapel Hill, NC, USA., McCormack J; Evidera, Patient-Centered Research, Bethesda, MD, USA., Bird LM; Department of Pediatrics, University of California San Diego, San Diego, CA, USA., Burdine RD; Department of Molecular Biology, Princeton University, Princeton, NJ, USA., Claridge S; Foundation for Angelman Syndrome Research (FAST), Downers Grove, IL, USA., Bichell TJ; Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders, Nashville, TN, USA.
Source: Child psychiatry and human development [Child Psychiatry Hum Dev] 2021 Aug; Vol. 52 (4), pp. 654-668.
Publication Type: Journal Article
Journal Info: Publisher: Kluwer Academic/Plenum Publishers Country of Publication: United States NLM ID: 1275332 Publication Model: Print Cited Medium: Internet ISSN: 1573-3327 (Electronic) Linking ISSN: 0009398X NLM ISO Abbreviation: Child Psychiatry Hum Dev Subsets: MEDLINE
Database: MEDLINE Ultimate
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ISSN:1573-3327
DOI:10.1007/s10578-020-01051-z