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

Kimmo WeisshaarHannah EwaldJörg HalterSabine GerullSandra SchönfeldYuliya SenftMaria MartinezAnne Leuppi-TaegtmeyerNina KhannaBirgit MaierAntonio RisitanoRegis Peffault de LatourAndre TichelliJakob PasswegBeatrice Drexler
Published in: Orphanet journal of rare diseases (2020)
The development of symptom self-reporting questionnaires for AA and PNH was feasible and the disease-specific PRO questionnaires can now be validated within a web-based workflow in a subsequent feasibility study.
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