Including adults with intellectual disabilities in personalized medicine efforts
Official title: Including Adults with Intellectual Disability in Precision Medicine Research - Project ENGAGE
Funded at Syracuse University · NIH-10894293 · Data updated 2026-11-12
This study is all about helping adults with intellectual disabilities take part in personalized healthcare research, making sure their unique needs are understood and that they feel included and empowered in the process.
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 | 2024 |
| Award (this year) | $627,891 |
| NIH project number | 5R01HD108701-03 |
| Project ID | NIH-10894293 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are adults aged 21 and older who have intellectual disabilities and are interested in participating in precision medicine initiatives.
✕Less likely to help
Patients who do not have intellectual disabilities or are under the age of 21 may not receive benefits from this research.
What this research studies
This research focuses on integrating adults with intellectual disabilities into precision medicine initiatives, which aim to tailor healthcare based on individual genetic and non-genetic factors. The project seeks to identify the unique needs of these individuals to ensure their meaningful participation and consent in research. It also addresses ethical concerns related to consent and the return of genetic results, while promoting empowerment and inclusion. By collaborating with community partners, the study aims to develop educational resources and practical tools to facilitate the engagement of adults with intellectual disabilities in precision medicine.
Why it matters
Potential benefit: If successful, this research could lead to improved healthcare outcomes and reduced health disparities for adults with intellectual disabilities.
How similar studies have gone: While the inclusion of adults with intellectual disabilities in precision medicine is a relatively novel approach, there is growing recognition of the need for their participation in health research, indicating potential for success.
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
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-
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.
-
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.