Helping Adults with Intellectual Disability Participate in Personalized Medicine
Including Adults with Intellectual Disability in Precision Medicine Research - Project ENGAGE
This initiative helps adults with intellectual disability join personalized medicine efforts, ensuring their voices are heard and their health needs are met.
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-11143784 on NIH RePORTER |
What this research studies
Many adults with intellectual disability want to be part of personalized medicine, which uses unique genetic and health information to create tailored treatments. However, they often face challenges in participating, such as difficulties with consent or researchers not knowing how to best include them. This work aims to understand these challenges better and create helpful tools and resources for both patients and researchers. By working together with the community, we hope to make personalized medicine more accessible and beneficial for everyone.
Who could benefit from this research
Good fit: Ideal candidates for this work would be adults aged 21 and older with intellectual disability, along with their caregivers and researchers interested in inclusive practices.
Not a fit: Patients who do not have an intellectual disability or are under 21 years old would not directly benefit from this specific focus on inclusion.
Why it matters
Potential benefit: If successful, this work could lead to more inclusive personalized medicine, allowing adults with intellectual disability to benefit from tailored health approaches and address their specific health needs.
How similar studies have performed: While the need for inclusive practices is recognized, this specific approach to developing comprehensive resources and best practices for adults with intellectual disability in precision medicine is relatively novel.
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.