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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Vydáno v:Orphanet J Rare Dis
Hlavní autoři: 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
Médium: Artigo
Jazyk:Inglês
Vydáno: BioMed Central 2020
Témata:
Research
On-line přístup: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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