Including adults with intellectual disability in precision medicine
Including Adults with Intellectual Disability in Precision Medicine Research - Project ENGAGE
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 ID | NIH-11264320 on NIH RePORTER |
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.
Who could benefit from this research
Good fit: 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.
Not a fit: People under 21, those without intellectual disability, or individuals whose condition prevents any meaningful participation may not directly benefit from this project.
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 performed: 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, United States
- Syracuse University — Syracuse, United States (Active)
Researchers
- Principal investigator: Mcdonald, Katherine Elizabeth — Syracuse University
- Study coordinator: Mcdonald, Katherine Elizabeth
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 below.