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Quantifying the impact of symptomatic acute hepatic porphyria on well-being via patient-reported outcomes: Results from the Porphyria Worldwide Patient Experience Research (POWER) study.
Dickey, Amy; Wheeden, Kristen; Lyon, Desiree; Burrell, Sue; Hegarty, Sean; Falchetto, Rocco; Williams, Edrin R; Barman-Aksözen, Jasmin; DeCongelio, Marc; Bulkley, Alison; Matos, Joana E; Mnif, Tarek; Mora, Jordanna; Ko, John J; Meninger, Stephen; Lombardelli, Stephen; Nance, Danielle.
Afiliación
  • Dickey A; Division of Pulmonary and Critical Care Medicine, Department of Medicine Massachusetts General Hospital Boston Massachusetts USA.
  • Wheeden K; American Porphyria Foundation Bethesda Maryland USA.
  • Lyon D; American Porphyria Foundation Bethesda Maryland USA.
  • Burrell S; Global Porphyria Advocacy Coalition Durham City UK.
  • Hegarty S; Global Porphyria Advocacy Coalition Durham City UK.
  • Falchetto R; Swiss Society for Porphyria Zürich Switzerland.
  • Williams ER; American Porphyria Foundation Bethesda Maryland USA.
  • Barman-Aksözen J; Swiss Society for Porphyria Zürich Switzerland.
  • DeCongelio M; Institute of Laboratory Medicine, Department of Medical Institutes Stadtspital Zürich, Triemli Zürich Switzerland.
  • Bulkley A; Cerner Enviza (formerly Kantar Health) New York New York USA.
  • Matos JE; Cerner Enviza (formerly Kantar Health) New York New York USA.
  • Mnif T; Cerner Enviza (formerly Kantar Health) Kansas City Missouri USA.
  • Mora J; Cerner Enviza (formerly Kantar Health) Paris France.
  • Ko JJ; Alnylam Pharmaceuticals Cambridge Massachusetts USA.
  • Meninger S; Alnylam Pharmaceuticals Cambridge Massachusetts USA.
  • Lombardelli S; Alnylam Pharmaceuticals Cambridge Massachusetts USA.
  • Nance D; Alnylam Pharmaceuticals Maidenhead UK.
JIMD Rep ; 64(1): 104-113, 2023 Jan.
Article en En | MEDLINE | ID: mdl-36636593
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Tipo de estudio: Diagnostic_studies Aspecto: Patient_preference Idioma: En Revista: JIMD Rep Año: 2023 Tipo del documento: Article Pais de publicación: Estados Unidos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Tipo de estudio: Diagnostic_studies Aspecto: Patient_preference Idioma: En Revista: JIMD Rep Año: 2023 Tipo del documento: Article Pais de publicación: Estados Unidos