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Measuring What Matters to Individuals with Angelman Syndrome and Their Families: Development of a Patient-Centered Disease Concept Model.
Willgoss, Tom; Cassater, Daiana; Connor, Siobhan; Krishnan, Michelle L; Miller, Meghan T; Dias-Barbosa, Carla; Phillips, Dawn; McCormack, Julie; Bird, Lynne M; Burdine, Rebecca D; Claridge, Sharon; Bichell, Terry Jo.
Afiliação
  • 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.
Child Psychiatry Hum Dev ; 52(4): 654-668, 2021 08.
Article em En | MEDLINE | ID: mdl-32880036
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Síndrome de Angelman Tipo de estudo: Qualitative_research Idioma: En Revista: Child Psychiatry Hum Dev Ano de publicação: 2021 Tipo de documento: Article País de afiliação: Reino Unido
Texto completo
Adicionar na Minha BVS
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Síndrome de Angelman Tipo de estudo: Qualitative_research Idioma: En Revista: Child Psychiatry Hum Dev Ano de publicação: 2021 Tipo de documento: Article País de afiliação: Reino Unido