Washington D.C., Aug. 18, 2026 (GLOBE NEWSWIRE) — The National Down Syndrome Society (NDSS) has launched MinDSet Down Syndrome, a new digital training designed to prepare clinical research teams to effectively and confidently engage individuals with Down syndrome in research. 

 

A recent NDSS survey of 200 caregivers of adults with Down syndrome found that 59% would be more likely to trust a clinical trial site if researchers had experience working with individuals with Down syndrome. The results highlight the importance of preparing clinical site teams with the skills and knowledge necessary to foster trust and support meaningful participation within the Down syndrome community. 

  

To address this need, NDSS developed MinDSet Down Syndrome, a free, one-hour, on-demand training that provides clinical research teams with the strategies, tools, and resources to create welcoming and accessible research environments for individuals with Down syndrome. Developed in collaboration with clinicians, researchers, families, and self-advocates with Down syndrome, this course builds on the confidence and knowledge study teams need to welcome and support participants, while improving both the participant experience and research outcomes. 

 

“With advances and growing opportunities for clinical research, there is a need to ensure clinical research teams are prepared to work with individuals with Down syndrome,” said Kandi Pickard, NDSS CEO. “MinDSet Down Syndrome is a step toward that goal, providing study teams with the knowledge and tools to create positive, person-centered experiences, so that more individuals with Down syndrome feel welcomed and empowered to participate in research that matters to them.” 

 

Developed in collaboration with clinicians, researchers, families, and self-advocates, the course equips study teams with tools and best practices to improve both participant experience and research outcomes. 

 

MinDSet Down Syndrome Training content includes: 

  • Understanding the science of Down syndrome 
  • Medical and behavioral considerations 
  • The significant role of caregivers  
  • Key communication and interaction strategies 
  • Detecting common non-verbal cues 
  • Practical tips for pacing study visits 
  • Creating an environment for successful procedures like MRI, PET, and lumbar puncture 
  • Best practices for consent/assent  
  • Strategies for engaging the local community 

 

All members of clinical research teams are encouraged to enroll in the course and take advantage of this free resource. To learn more about MinDSet Down Syndrome or enroll in the course, visit mindsetds.org.  

 

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About NDSS 
The National Down Syndrome Society’s (NDSS) mission is to create a world where individuals with Down syndrome thrive. NDSS advances this mission through its core pillars of Resources & Support, Research, Advocacy & Policy, and Community Engagement. NDSS founded the National Buddy Walk® Program in 1995 and hosts community engagement events throughout the country including the New York City Buddy Walk® and Times Square Video, the NDSS Adult Summit, and the Down Syndrome Advocacy Conference. Visit www.ndss.org to learn more. 

 


Michelle Sagan
National Down Syndrome Society
301 728 0447
msagan@ndss.org

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