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...

Popoln opis

Shranjeno v:
Bibliografske podrobnosti
izdano v:JIMD Rep
Main Authors: 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
Format: Artigo
Jezik:Inglês
Izdano: John Wiley & Sons, Inc. 2019
Teme:
Research Reports
Online dostop: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
Oznake: Označite
Brez oznak, prvi označite!

Podobne knjige/članki