Measuring health-related quality of life in patients with rare disease

Measuring health-related quality of life in patients with rare disease

Abstract Background There has been a growing emphasis on health-related quality of life (HRQoL) as an important outcome in rare disease drug development, although its assessment may be useful outside the drug development context, including in clinical applications or natural history studies. Central...

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Bibliographic Details
Main Authors: William R. Lenderking, Milena Anatchkova, Robin Pokrzywinski, Anne Skalicky, Mona L. Martin, Heather Gelhorn
Format: Article
Language:English
Published: SpringerOpen 2021-07-01
Series:Journal of Patient-Reported Outcomes
Subjects:
Rare disease
HRQoL
Clinical outcome assessment (COA)
Item banks
Measure adaptation
FDA
Online Access:https://doi.org/10.1186/s41687-021-00336-8

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