“Shifting and sharing the power” in research: Views and perspectives on research priorities from the Down syndrome, Fragile X syndrome and Williams syndrome communities

Abstract excerpt

People with intellectual disabilities and their communities are rarely involved in setting priorities for research. Our study addressed this gap through consultations with the UK communities of three genetic syndromes in which intellectual disabilities are common: Down syndrome (DS), Fragile X syndrome (FXS) and Williams syndrome (WS). The study aimed to provide an understanding of (1) the views of the DS, FXS and...

Topics

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• Child
• Genomics and Rare Diseases
• Hearing, Cochlea, Tinnitus, Genetics
• Mutation
• Netherlands
• Noonan Syndrome
• Patient Participation
• Prenatal Screening and Diagnostics

Identifiers and source

Literature Corpus work

a47207df-eee7-5afc-a520-7c08b7c4ad87

DOI

10.64898/2026.08.20.26360980