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

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 life (Q...

Πλήρης περιγραφή

Αποθηκεύτηκε σε:
Λεπτομέρειες βιβλιογραφικής εγγραφής
Τόπος έκδοσης:JIMD Rep
Κύριοι συγγραφείς: Naik, Hetanshi, Overbey, Jessica R., Desnick, Robert J., Anderson, Karl E., Bissell, D. Montgomery, Bloomer, Joseph, Bonkovsky, Herbert L., Phillips, John D., Wang, Bruce, Singal, Ashwani, Balwani, Manisha
Μορφή: Artigo
Γλώσσα:Inglês
Έκδοση: John Wiley & Sons, Inc. 2019
Θέματα:
Research Reports
Διαθέσιμο Online:https://ncbi.nlm.nih.gov/pmc/articles/PMC6850979/
https://ncbi.nlm.nih.gov/pubmed/31741822
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1002/jmd2.12052
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