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Chapter Patient-generated evidence in Epidermolysis Bullosa (EB): Development of a questionnaire to assess the Quality of Life

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Epidermolysis Bullosa (EB) is a group of genetic conditions that cause fragile and blistering skin. Although there are different types of EB, which differ in severity, their signs and symptoms overlap. As a result of this disorder, patients face an unbearable burden in their lives, and their Quality...

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Autor principal: Pilo, Cinzia (auth)
Otros Autores: Benedan, Laura (auth), El Hachem, May (auth), Galeone, Carlotta (auth), Mariani, Paolo (auth), Tadini, Gianluca (auth)
Formato: Electrónico Capítulo de libro
Lenguaje:inglés
Publicado: Florence Firenze University Press 2021
Colección:Proceedings e report 132
Materias:
Social research & statistics
Epidermolysis Bullosa
Patient-centered approach
Quality of Life
Pseudo-Delphi
Acceso en línea:OAPEN Library: download the publication
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