Analysis of the caregiver burden associated with Sanfilippo syndrome type B: panel recommendations based on qualitative and quantitative data

BACKGROUND: Sanfilippo syndrome type B (Sanfilippo B) belongs to a group of rare lysosomal storage diseases characterized by progressive cognitive decline from an early age, acute hyperactivity, and concomitant somatic symptoms. Caregivers face a unique set of challenges related to the complex natur...

Descripción completa

Detalles Bibliográficos
Autores principales: Shapiro, Elsa, Lourenço, Charles Marques, Mungan, Neslihan Onenli, Muschol, Nicole, O’Neill, Cara, Vijayaraghavan, Suresh
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6615275/
https://www.ncbi.nlm.nih.gov/pubmed/31287005
http://dx.doi.org/10.1186/s13023-019-1150-1

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6615275/
https://www.ncbi.nlm.nih.gov/pubmed/31287005
http://dx.doi.org/10.1186/s13023-019-1150-1

Ejemplares similares