Measuring health related quality of life (HRQoL) in Lysosomal Storage Disorders (LSDs): a rapid scoping review of available tools and domains

Abstract Background Lysosomal storage diseases (LSDs) are a group of rare inherited metabolic disorders, consisting of over 70 diseases that are characterised by lysosomal dysfunction. Due to their varied and progressive symptoms, LSDs have a continual impact on patients’ health-related quality of l...

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Bibliografische gegevens

Hoofdauteurs:	Emily McDool, Philip Powell, Jill Carlton
Formaat:	Artigo
Taal:	Inglês
Gepubliceerd in:	BMC 2024-07-01
Reeks:	Orphanet Journal of Rare Diseases
Onderwerpen:	Patient reported outcome measures (PROMs) Health-related quality of life (HRQoL) Lysosomal Storage Disorders (LSDs)
Online toegang:	https://doi.org/10.1186/s13023-024-03256-0
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