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-11264320 · Data updated 2026-11-12
This project creates a tailored consent toolkit to help adults with intellectual disability understand and take part in precision medicine studies.
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 | 2025 |
| Award (this year) | $147,186 |
| NIH project number | 3R01HD108701-04S1 |
| Project ID | NIH-11264320 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal participants are adults aged 21 and older with intellectual disability, along with their caregivers or legal representatives, who are willing to discuss research participation.
✕Less likely to help
People under 21, those without intellectual disability, or individuals whose condition prevents any meaningful participation may not directly benefit from this project.
What this research studies
If you take part, researchers will work with adults with intellectual disability, their caregivers, and legal experts to design clear legal, educational, and practical consent materials called the ENGAGE Toolkit. They will develop and pilot a fair screening method to determine each person's ability to give consent, using interviews, feedback, and real-world testing. The team will adapt tools specifically for adults with intellectual disability so the results are accurate and respectful. Your experiences and feedback will help shape how the toolkit is used in future precision medicine projects.
Why it matters
Potential benefit: If successful, more adults with intellectual disability could safely join precision medicine studies and have their choices and rights better respected.
How similar studies have gone: Prior work suggests tailored consent approaches can improve understanding, but validated, population-specific consent capacity tools for adults with intellectual disability remain limited.
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
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Understanding early cognitive skills in children with Down syndrome
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Including Adults with Intellectual Disability in Precision Medicine
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.
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Step It Up+: helping adults with intellectual disability be more active
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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.