Including Adults with Intellectual Disability in Precision Medicine
Official title: Including Adults with Intellectual Disability in Precision Medicine Research - Project ENGAGE
Funded at Syracuse University · NIH-11376567 · Data updated 2026-11-12
This grant funds a study to help adults with intellectual disability participate more fully in precision medicine research and understand how to respect their consent and privacy while sharing useful health information.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Syracuse University NIH-funded |
| Lab location | 1 site (Syracuse, United States) |
| Project start | July 15, 2022 |
| Project end | June 30, 2027 |
| Funding year | 2026 |
| Award (this year) | $586,476 |
| NIH project number | 5R01HD108701-05 |
| Project ID | NIH-11376567 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adults aged 21 and older with intellectual disability who can engage in consent discussions with appropriate supports or proxies.
✕Less likely to help
Individuals who do not wish to participate or require unsupported consent models may not directly benefit.
What this research studies
If you are an adult with an intellectual disability, this project aims to figure out how to involve you safely and fairly in precision medicine research. Researchers will work with communities and clinicians to identify consent models, decision making, and ways to share genetic information that protect privacy and empower participants. The study uses partnerships between universities and community groups to develop resources and educational tools that support meaningful participation. The goal is to make precision medicine more inclusive so that adults like you can benefit from advances in health research.
Why it matters
Potential benefit: If successful, this work could lead to better ways to include adults with intellectual disabilities in genetic and health research and ensure their preferences and privacy are respected.
How similar studies have gone: Prior work shows that inclusive consent approaches are feasible, but this project addresses specific needs around PMR participation for adults with intellectual disability.
Where this research is happening
-
Syracuse University
Syracuse, United States Active
Researchers
- Principal investigator: Mcdonald, Katherine Elizabeth — Syracuse University
- Study coordinator: Mcdonald, Katherine Elizabeth
Related research
Other NIH-funded projects on the same topics.
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Understanding genetic causes of intellectual disability across diverse populations
Aiming to find gene variants that contribute to intellectual disability in people from African, Asian, and European backgrounds to improve diagnosis and future treatments.
-
Understanding early cognitive skills in children with Down syndrome
We’re studying how early thinking skills develop in young children with Down syndrome and what factors influence severe intellectual disability later on.
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Step It Up+: helping adults with intellectual disability be more active
This 16-week program helps adults with intellectual disability use goal-setting, a web dashboard, and a support coach to increase daily steps and aerobic and strength activity.
-
Understanding brain responses in children with autism and intellectual disability
This project uses child-friendly EEG and eye-tracking to measure brain responses and looking patterns in 6–11-year-old children with autism and intellectual disability.
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Understanding and fixing SETD5-related brain problems in children with autism and intellectual disability
Developing treatments that target the SETD5 gene to help young children with autism and intellectual disability.
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Including adults with intellectual disability in precision medicine
This project creates a tailored consent toolkit to help adults with intellectual disability understand and take part in precision medicine studies.
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.