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Author: Amanda Nicole White, et al.

Year of Publication: 2021


Background: Down syndrome is the most common genetic disorder associated with intellectual and developmental disabilities. Research to improve health care outcomes in Down syndrome lags significantly behind other disease categories. Among these reasons are funding, recruitment and availability of research studies being conducted.

Methods: We surveyed 228 parents of individuals with Down syndrome to understand their perceptions of research, study design, how they seek out information and topics they would like to see researched.

Results: Parents with children 18 years and younger responded to our survey. Parents indicated their willingness to participate in research (72%), yet few have (36%). Parents identified barriers to participation, research they feel would help their child, and interests in seeing new therapies and drug studies.

Conclusion: These findings identify recommendations and insights from parents on future research agendas, studies and recruitment strategies that may help researchers improve outcomes for individuals with Down syndrome.