Evaluating quality of life tools in North American patients with erythropoietic protoporphyria and X‐linked protoporphyria

Evaluating quality of life tools in North American patients with erythropoietic protoporphyria and X‐linked protoporphyria

Abstract Background Erythropoietic protoporphyria (EPP) and X‐linked Protoporphyria (XLP) are rare photodermatoses presenting with severe phototoxicity. Although anecdotally, providers who treat EPP patients acknowledge their life‐altering effects, tools that fully capture their impact on quality of...

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Bibliographic Details
Main Authors: Hetanshi Naik, Jessica R. Overbey, Robert J. Desnick, Karl E. Anderson, D. Montgomery Bissell, Joseph Bloomer, Herbert L. Bonkovsky, John D. Phillips, Bruce Wang, Ashwani Singal, Manisha Balwani
Format: Article
Language:English
Published: Wiley 2019-11-01
Series:JIMD Reports
Subjects:
erythropoietic proto
porphyria
PROMIS
quality of life
Online Access:https://doi.org/10.1002/jmd2.12052

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