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Research Publications

Research PublicationsCaregiver knowledge of obstructive sleep apnea in Down syndrome
December 13, 2023

Caregiver knowledge of obstructive sleep apnea in Down syndrome

Author: Sandra Gimenez, et al. Year of Publication: 2022 Abstract Background: Down syndrome (DS) population has a very high prevalence of obstructive sleep apnoea (OSA), but this remains underdiagnosed. Hence, we…
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Research PublicationsOpportunities, Barriers, and Recommendations in Down Syndrome Research
December 13, 2023

Opportunities, Barriers, and Recommendations in Down Syndrome Research

Author: James Hendrix, et al.Year of Publication: 2020 Abstract BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome…
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Research PublicationsParental perspectives on research for Down syndrome
December 13, 2023

Parental perspectives on research for Down syndrome

Author: Amanda Nicole White, et al.Year of Publication: 2021 Abstract Background: Down syndrome is the most common genetic disorder associated with intellectual and developmental disabilities. Research to improve health care…
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Research PublicationsCaregivers evaluate independence in individuals with Down syndrome
December 13, 2023

Caregivers evaluate independence in individuals with Down syndrome

Author: Stephanie L. Santoro, et al.Year of Publication: 2022 Abstract Independence is both a sense of autonomy and self-reliance coupled with the skills to complete tasks without assistance. Questionnaire of…
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Research PublicationsHealthcare Experiences of Patients with Down Syndrome Who Are Black, African American, of African Descent, or of Mixed Race
December 13, 2023

Healthcare Experiences of Patients with Down Syndrome Who Are Black, African American, of African Descent, or of Mixed Race

Author: Kavita Krell, et al.Year of Publication: 2022 Abstract Scant research has explored the healthcare experiences of people with Down syndrome (DS) in the United States who are Black, African…
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Research PublicationsCaregivers’ Perception of Adults with Down Syndrome Willingness to Participate in Research
December 13, 2023

Caregivers’ Perception of Adults with Down Syndrome Willingness to Participate in Research

Author: Nichole Kyprianou, et al.Year of Publication: 2022 Abstract Background Historically, individuals with Down syndrome have been excluded from clinical research. Our objective was to assess the degree of interest…
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Research PublicationsConducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group
December 13, 2023

Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group

Author: Nicole Baumer, et al. Year of Publication: 2022 Abstract The recent National Institute of Health (NIH) INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) initiative…
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Research PublicationsDiagnosing Hope: The New Era of Alzheimer’s Disease Treatment Hinges on Innovations in Diagnostics
December 13, 2023

Diagnosing Hope: The New Era of Alzheimer’s Disease Treatment Hinges on Innovations in Diagnostics

Author: Network for Excellence in Health InnovationYear of Publication: 2023 Abstract A new era has begun with recent 2023 FDA approval of Leqembi, and the expected approval of donanemab, new…
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Research PublicationsWeight management recommendations for youth with Down syndrome: Expert recommendations
December 13, 2023

Weight management recommendations for youth with Down syndrome: Expert recommendations

Author: Lauren T. Ptomey, et al. Year of Publication: 2023 Abstract Youth with Down syndrome (DS) have a higher prevalence of overweight and obesitycompared to the general youth population. Due…
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Research PublicationsA feasibility study demonstrating that independence, quality of life, and adaptive behavioral skills can improve in children with Down syndrome after using assistive technology
December 13, 2023

A feasibility study demonstrating that independence, quality of life, and adaptive behavioral skills can improve in children with Down syndrome after using assistive technology

Author: Kaylin White, et al.Year of Publication: 2023 Abstract Enhancing independence and quality of life are key modifiable outcomes that are short- and long-term goals for children with Down syndrome…
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Research PublicationsFurther understanding the connection between Alzheimer’s disease and Down syndrome
December 13, 2023

Further understanding the connection between Alzheimer’s disease and Down syndrome

Author: Heather Snyder, et al.Year of Publication: 2020 Abstract Improved medical care of individuals with Down syndrome (DS) has led to an increase in life expectancy to over the age…
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Research Publications“CrossSectional Exploration of Plasma Biomarkers of Alzheimer’s Disease in Down Syndrome: Early Data from the Longitudinal Investigation for Enhancing Down Syndrome Research (LIFEDSR) Study”
December 13, 2023

“CrossSectional Exploration of Plasma Biomarkers of Alzheimer’s Disease in Down Syndrome: Early Data from the Longitudinal Investigation for Enhancing Down Syndrome Research (LIFEDSR) Study”

Author: James Hendrix, et al.Year of Publication: 2021 Abstract With improved healthcare, the Down syndrome (DS) population is both growing and aging rapidly. However, with longevity comes a very high…
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Research PublicationsExamining older adults with neuroatypical conditions for MCI/dementia: Barriers and recommendations of the Neuroatypical Conditions Expert Consultative Panel
December 13, 2023

Examining older adults with neuroatypical conditions for MCI/dementia: Barriers and recommendations of the Neuroatypical Conditions Expert Consultative Panel

Author: Matthew Janicki, et al. Year of Publication: 2022 Abstract Detection of any cognitive impairment as part of the Affordable Care Act’s annual wellness visit in primary or other health…
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Research PublicationsView on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds
December 13, 2023

View on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds

Author: Stephanie L. Santoro, et al.Year of Publication: 2023 Abstract Down syndrome (DS) has a unique medical and psychological profile. To date, few studies have asked individuals with DS about…
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Research PublicationsHealthcare and Behavior Changes for Adults With Down Syndrome 1 Year into COVID-19
December 13, 2023

Healthcare and Behavior Changes for Adults With Down Syndrome 1 Year into COVID-19

Author: Eric Rubenstein, et al.Year of Publication: 2023 Abstract Individuals with Down syndrome (DS) have been disproportionately harmed by the COVID-19 pandemic and may have been more likely to have…
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