Validation of a novel patient reported tool to assess the impact of treatment in erythropoietic protoporphyria: the EPP-QoL

BACKGROUND: A novel treatment has been developed for erythropoietic protoporphyria (EPP) (a rare condition that leaves patients highly sensitive to light). To fully understand the burden of EPP and the benefit of treatment, a novel patient reported outcome (PRO) measure was developed called the EPP-...

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Detalles Bibliográficos
Autores principales: Biolcati, G., Hanneken, S., Minder, E. I., Neumann, N. J., Wilson, J. H. P., Wolgen, P. J., Wright, D. J., Lloyd, A. J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2021
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8333176/
https://www.ncbi.nlm.nih.gov/pubmed/34342778
http://dx.doi.org/10.1186/s41687-021-00345-7

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