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Research Publications

Research Publications
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 Publications
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 Publications
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 Publications
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 Publications
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 Publications
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 Publications
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 Publications
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 Publications
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 Publications
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 Publications
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
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 Publications
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 Publications
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 Publications
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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