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

Acute hepatic porphyria (AHP) is a group of rare genetic diseases of heme biosynthesis resulting in severe neurovisceral attacks and chronic complications that negatively impact patients' well‐being. This study evaluated the impacts of AHP on patients' physical and emotional health from a...

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Detalles Bibliográficos
Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley & Sons, Inc. 2022
Materias:
Research Reports
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9830021/
https://www.ncbi.nlm.nih.gov/pubmed/36636593
http://dx.doi.org/10.1002/jmd2.12343

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