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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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  Data: <searchLink fieldCode="AU" term="%22Willgoss+T%22">Willgoss T</searchLink>; Roche Products Limited, Hexagon Place, 6 Falcon Way, Shire Park, Welwyn Garden City, AL7 1TW, UK. tom.willgoss@roche.com.<br /><searchLink fieldCode="AU" term="%22Cassater+D%22">Cassater D</searchLink>; Roche Innovation Center Basel, F. Hoffmann-La Roche Ltd, Basel, Switzerland.<br /><searchLink fieldCode="AU" term="%22Connor+S%22">Connor S</searchLink>; Roche Products Limited, Hexagon Place, 6 Falcon Way, Shire Park, Welwyn Garden City, AL7 1TW, UK.<br /><searchLink fieldCode="AU" term="%22Krishnan+ML%22">Krishnan ML</searchLink>; Roche Innovation Center Basel, F. Hoffmann-La Roche Ltd, Basel, Switzerland.<br /><searchLink fieldCode="AU" term="%22Miller+MT%22">Miller MT</searchLink>; Roche Innovation Center Basel, F. Hoffmann-La Roche Ltd, Basel, Switzerland.<br /><searchLink fieldCode="AU" term="%22Dias-Barbosa+C%22">Dias-Barbosa C</searchLink>; Evidera, Hammersmith, London, UK.<br /><searchLink fieldCode="AU" term="%22Phillips+D%22">Phillips D</searchLink>; Division of Physical Therapy, School of Medicine, University of North Carolina, Chapel Hill, NC, USA.<br /><searchLink fieldCode="AU" term="%22McCormack+J%22">McCormack J</searchLink>; Evidera, Patient-Centered Research, Bethesda, MD, USA.<br /><searchLink fieldCode="AU" term="%22Bird+LM%22">Bird LM</searchLink>; Department of Pediatrics, University of California San Diego, San Diego, CA, USA.<br /><searchLink fieldCode="AU" term="%22Burdine+RD%22">Burdine RD</searchLink>; Department of Molecular Biology, Princeton University, Princeton, NJ, USA.<br /><searchLink fieldCode="AU" term="%22Claridge+S%22">Claridge S</searchLink>; Foundation for Angelman Syndrome Research (FAST), Downers Grove, IL, USA.<br /><searchLink fieldCode="AU" term="%22Bichell+TJ%22">Bichell TJ</searchLink>; Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders, Nashville, TN, USA.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22Kluwer+Academic%2FPlenum+Publishers%22">Kluwer Academic/Plenum Publishers </searchLink><i>Country of Publication: </i>United States <i>NLM ID: </i>1275332 <i>Publication Model: </i>Print <i>Cited Medium: </i>Internet <i>ISSN: </i>1573-3327 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%220009398X%22">0009398X </searchLink><i>NLM ISO Abbreviation: </i>Child Psychiatry Hum Dev <i>Subsets: </i>MEDLINE
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