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journal patient reported outcomes

Validation of a novel patient reported tool to assess the impact of treatment in erythropoietic protoporphyria: the EPP-QoL 3. August 2021
A novel treatment has been developed for erythropoietic protoporphyria (EPP) (a rare condition that leaves patients highly sensitive to light). To fully understand the burden of EPP and the benefit of treatmen...
G. Biolcatti, S. Hanneken, E. I. Minder, N. J. Neumann, J. H. P. Wilson, P. J. Wolgen, D. J. Wright and A. J. Lloyd
Validity arguments for patient-reported outcomes: justifying the intended interpretation and use of data 30. July 2021
Contrary to common usage in the health sciences, the term “valid” refers not to the properties of a measurement instrument but to the extent to which data-derived inferences are appropriate, meaningful, and us...
Melanie Hawkins, Gerald R. Elsworth, Sandra Nolte and Richard H. Osborne
Correction to: Development of patient-reported outcomes item set to evaluate acute treatment toxicity to pelvic online magnetic resonance-guided radiotherapy 27. July 2021
P. K. Møller, H. Pappot, U. Bernchou, T. Schytte and K. B. Dieperink
Content validation of a self-report daily diary in patients with sickle cell disease 27. July 2021
Sickle Cell Disease (SCD) is a genetic progressive vascular disease that impacts patients overall health and quality of life. Sickle-cell pain crises (SCPCs) are a hallmark clinical presentation of SCD and hav...
Michelle K. White, Cory Saucier, Miranda Bailey, Denise D’Alessio, April Foster, Danielle St. Pierre and Kimberly Raymond
Measuring health-related quality of life in patients with rare disease 20. July 2021
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,...
William R. Lenderking, Milena Anatchkova, Robin Pokrzywinski, Anne Skalicky, Mona L. Martin and Heather Gelhorn

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