MinDSet Down Syndrome

MinDSet Down Syndrome by the National Down Syndrome Society logo with a graphic of DNA

NDSS created the MinDSet Down Syndrome Training to support the growing network of clinical research sites that will welcome individuals with Down syndrome. This training is intended for all staff at clinical research sites.

Recent advances in science and policy have helped remove barriers to research participation for individuals with Down syndrome. These changes have helped increase the demand for large-scale research in Down syndrome, and this need is expected to continue growing. However, many clinical study teams do not have direct experience working with individuals with Down syndrome. 

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Why this Training is Important

A female doctor in purple scrubs takes the blood pressure of a young girl in a pink shirt.

A recent survey of nearly 200 caregivers of adults with Down syndrome reinforced the need for research teams to be confident and competent in working with individuals with Down syndrome. This is a determining factor in their willingness to encourage their loved one to participate in clinical research.

Nearly 60% of respondents said a trial site with “researchers who have personal or professional experience working with individuals with Down syndrome” would increase their trust in a clinical trial.

MinDSet Down Syndrome Curriculum

A white man with Down syndrome is seated in an exam chair wearing a hospital gown. Next to him on one side is a young woman with dark hair who is seated and is speaking with papers in her hand and on the other side is a bald man with glasses and a gotee. The men appear to be listening to what the woman is explaining to them.

MinDSet Down Syndrome is a digital, on-demand learning course that introduces the fundamentals of Down syndrome and provides guidance on culturally informed engagement strategies. Through this accessible, brief, and comprehensive curriculum, NDSS is empowering study teams to create a welcoming and inclusive environment for participants with Down syndrome. Providing strategies, tools, and resources, the one-hour course ensures clinical study teams are ready to provide a participant-centered environment to improve both the participant experience and research outcomes. The curriculum was developed in collaboration with clinicians, researchers, families, and self-advocates with Down syndrome.

The one-hour eLearning course is free, but trainees must register before gaining access, and are asked to complete a training survey upon completion.

The MinDSet Down Syndrome course includes information, guides, videos, and templates on:

  • 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  

For more information about MinDSet Down Syndrome, contact Mindset@ndss.org. 

Additional Resources