Helping Adults with Intellectual Disability Participate in Personalized Medicine
Official title: Including Adults with Intellectual Disability in Precision Medicine Research - Project ENGAGE
Funded at Syracuse University · NIH-11143784 · Data updated 2026-11-12
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 start | July 15, 2022 |
| Project end | June 30, 2027 |
| Funding year | 2025 |
| Award (this year) | $619,926 |
| NIH project number | 5R01HD108701-04 |
| Project ID | NIH-11143784 on NIH RePORTER |
Who could benefit from this research
✓Could help
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.
✕Less likely to help
Patients who do not have an intellectual disability or are under 21 years old would not directly benefit from this specific focus on inclusion.
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.
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 gone: 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 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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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.
-
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.
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.