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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...
Autores principales: | Sevin, Caroline, Barth, Magalie, Wilds, Alexandra, Afriyie, Abena, Walz, Markus, Dillon, Annamarie, Howie, Kenneth, Pang, Francis |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2022
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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 |
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