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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.

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Title: 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.
Authors: 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.; Institute of Laboratory Medicine, Department of Medical Institutes Stadtspital Zürich, Triemli Zürich Switzerland., DeCongelio M; Cerner Enviza (formerly Kantar Health) New York New York USA., Bulkley A; Cerner Enviza (formerly Kantar Health) New York New York USA., Matos JE; Cerner Enviza (formerly Kantar Health) Kansas City Missouri USA., Mnif T; Cerner Enviza (formerly Kantar Health) Paris France., Mora J; Alnylam Pharmaceuticals Cambridge Massachusetts USA., Ko JJ; Alnylam Pharmaceuticals Cambridge Massachusetts USA., Meninger S; Alnylam Pharmaceuticals Cambridge Massachusetts USA., Lombardelli S; Alnylam Pharmaceuticals Maidenhead UK., Nance D; Banner Health Gilbert Arizona USA.
Source: JIMD reports [JIMD Rep] 2022 Oct 18; Vol. 64 (1), pp. 104-113. Date of Electronic Publication: 2022 Oct 18 (Print Publication: 2023).
Publication Type: Journal Article
Journal Info: Publisher: Wiley Country of Publication: United States NLM ID: 101568557 Publication Model: eCollection Cited Medium: Print ISSN: 2192-8304 (Print) Linking ISSN: 21928304 NLM ISO Abbreviation: JIMD Rep Subsets: PubMed not MEDLINE
Database: MEDLINE Ultimate
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ISSN:2192-8304
DOI:10.1002/jmd2.12343