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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Detaylı Bibliyografya
Asıl Yazarlar: 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
Materyal Türü: Artigo
Dil:Inglês
Baskı/Yayın Bilgisi: Wiley 2019-11-01
Seri Bilgileri:JIMD Reports
Konular:
erythropoietic proto
porphyria
PROMIS
quality of life
Online Erişim:https://doi.org/10.1002/jmd2.12052
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