Quality-Adjusted Life Years in Erythropoietic Protoporphyria and Other Rare Diseases: A Patient-Initiated EQ-5D Feasibility Study

Erythropoietic protoporphyria (EPP) is an ultra-rare inborn error of metabolism characterised by painful phototoxic burn injuries after short exposure times to visible light. Patients with EPP are highly adapted to their condition which makes the quantification of their health-related quality of lif...

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Detalles Bibliográficos
Autores principales: Barman-Aksözen, Jasmin, Minder, Anna-Elisabeth, Granata, Francesca, Pettersson, Mårten, Dechant, Cornelia, Aksözen, Mehmet Hakan, Falchetto, Rocco
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10094018/
https://www.ncbi.nlm.nih.gov/pubmed/37047912
http://dx.doi.org/10.3390/ijerph20075296

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