Cargando…
Incorporating the patient perspective in the study of rare bone disease: insights from the osteogenesis imperfecta community
SUMMARY: There is limited research which examines health concerns of individuals with osteogenesis imperfecta (OI). Discussion groups with leaders of the adult OI community identified a broad range of medical priorities beyond fractures and brittle bones. Our work underscores the need to include pat...
Autores principales: | Swezey, T., Reeve, B.B., Hart, T.S., Floor, M.K., Dollar, C.M., Gillies, A.P., Tosi, L.L. |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer London
2018
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6449303/ https://www.ncbi.nlm.nih.gov/pubmed/30191258 http://dx.doi.org/10.1007/s00198-018-4690-7 |
Ejemplares similares
-
Assessing disease experience across the life span for individuals with osteogenesis imperfecta: challenges and opportunities for patient-reported outcomes (PROs) measurement: a pilot study
por: Tosi, Laura L., et al.
Publicado: (2019) -
Osteogenesis imperfecta
por: Vitturi, Bruno Kusznir, et al.
Publicado: (2018) -
Osteogenesis Imperfecta
por: Sam, Justin Easow, et al.
Publicado: (2017) -
Initial report of the osteogenesis imperfecta adult natural history initiative
por: Tosi, Laura L., et al.
Publicado: (2015) -
Dentinogenesis imperfecta associated with osteogenesis imperfecta
por: Biria, Mina, et al.
Publicado: (2012)