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An international study of caregiver-reported burden and quality of life in metachromatic leukodystrophy

BACKGROUND: Metachromatic leukodystrophy (MLD) is an autosomal recessive lysosomal disorder caused by mutations in the arylsulfatase A gene. Until now, there has been little information on the burden of MLD on patients and their caregivers. This multinational study aims to quantify caregiver-related...

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Detalles Bibliográficos
Autores principales: Sevin, Caroline, Barth, Magalie, Wilds, Alexandra, Afriyie, Abena, Walz, Markus, Dillon, Annamarie, Howie, Kenneth, Pang, Francis
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9438185/
https://www.ncbi.nlm.nih.gov/pubmed/36056437
http://dx.doi.org/10.1186/s13023-022-02501-8