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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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
格式: Artigo
語言:Inglês
出版: Wiley 2019-11-01
叢編:JIMD Reports
主題:
erythropoietic proto
porphyria
PROMIS
quality of life
在線閱讀:https://doi.org/10.1002/jmd2.12052
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