Development of a patient-reported outcome questionnaire for aplastic anemia and paroxysmal nocturnal hemoglobinuria (PRO-AA/PNH)

BACKGROUND: The introduction of new therapy modalities has significantly improved the outcome of aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) patients. However, relatively little is known about the exact disease burden of AA/PNH since standardized assessments of symptoms includ...

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Detalhes bibliográficos
Publicado no:Orphanet J Rare Dis
Main Authors: Weisshaar, Kimmo, Ewald, Hannah, Halter, Jörg, Gerull, Sabine, Schönfeld, Sandra, Senft, Yuliya, Martinez, Maria, Leuppi-Taegtmeyer, Anne, Khanna, Nina, Maier, Birgit, Risitano, Antonio, Peffault de Latour, Regis, Tichelli, Andre, Passweg, Jakob, Drexler, Beatrice
Formato: Artigo
Idioma:Inglês
Publicado em: BioMed Central 2020
Assuntos:
Research
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC7495826/
https://ncbi.nlm.nih.gov/pubmed/32943103
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-020-01532-3
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