Involving Families with Osteogenesis Imperfecta in Health Service Research: Joint Development of the OI/ECE Questionnaire

BACKGROUND: Despite the growing interest in understanding the psycho-social impact of rare genetic diseases, few studies examine this concept and even fewer seek to obtain feedback from families who have lived the experience. The aim of this project was to involve families of children living with os...

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Detalles Bibliográficos
Autores principales: Dogba, Maman Joyce, Dahan-Oliel, Noémi, Snider, Laurie, Glorieux, Francis H., Durigova, Michaela, Palomo, Telma, Cordey, Michel, Bédard, Marie-Hélène, Bedos, Christophe, Rauch, Frank
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2016
Materias:
Research Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4723157/
https://www.ncbi.nlm.nih.gov/pubmed/26799959
http://dx.doi.org/10.1371/journal.pone.0147654

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