Development and content validation of a sunlight exposure diary in patients with erythropoietic protoporphyria

BACKGROUND: Erythropoietic protoporphyria is a rare, inherited disorder presenting in early childhood with severe, painful phototoxicity. EPP has significant impacts on health-related quality of life, though there is variable disease severity. Accurately capturing how much time individuals with EPP...

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Detalles Bibliográficos
Autores principales: Mathias, Susan D., Burke, Laurie, Colwell, Hilary H., Mensing, George, Savage, Will, Naik, Hetanshi
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2023
Materias:
Short Report
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10660587/
https://www.ncbi.nlm.nih.gov/pubmed/37982964
http://dx.doi.org/10.1186/s41687-023-00655-y

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