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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Manylion Llyfryddiaeth
Prif Awduron: 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
Fformat: Erthygl
Iaith:English
Cyhoeddwyd: Wiley 2019-11-01
Cyfres:JIMD Reports
Pynciau:
erythropoietic proto
porphyria
PROMIS
quality of life
Mynediad Ar-lein:https://doi.org/10.1002/jmd2.12052

Rhyngrwyd

https://doi.org/10.1002/jmd2.12052

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