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Drug Development.

Sarah Walter1, Lauren Ptomey2, Ann D Cohen3

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|December 26, 2025
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Summary
This summary is machine-generated.

Individuals with Down syndrome (DS) and their care partners are motivated to participate in Alzheimer's disease (AD) research. Their feedback is crucial for designing accessible and inclusive clinical trials for dementia prevention and treatment.

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Area of Science:

  • Neurodegenerative Diseases
  • Genetics and Aging

Background:

  • Down syndrome (DS) affects over 250,000 individuals in the US, with an increased risk of Alzheimer's disease (AD) after age 35.
  • Advances in healthcare have extended life expectancy for individuals with DS, highlighting the need for accessible dementia clinical trials.

Purpose of the Study:

  • To gather insights from self-advocates with DS and their care partners to improve the design of AD clinical trials.
  • To ensure inclusivity and accessibility in dementia research for the DS population.

Main Methods:

  • A research partnership group was formed, including six self-advocates with DS, their care partners, and researchers.
  • The group, supported by ACTC-DS and ABC-DS, held virtual meetings to discuss clinical trials and gather feedback.

Main Results:

  • Participants expressed strong motivation for AD research and emphasized the need for accessible study materials.
  • Key themes included direct communication with individuals with DS, accommodating comorbidities, reducing participant burden, and providing frequent research updates.
  • Involving self-advocates in research teams leads to more relevant outcomes for people with DS.

Conclusions:

  • Collaboration with self-advocates and families with DS enhances the accessibility of dementia studies.
  • This partnership provides valuable feedback to address the health priorities and needs of individuals with DS in aging and dementia research.