Including adults with intellectual disabilities in personalized medicine efforts
Including Adults with Intellectual Disability in Precision Medicine Research - Project ENGAGE
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 ID | NIH-10894293 on NIH RePORTER |
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.
Who could benefit from this research
Good fit: Ideal candidates for this research are adults aged 21 and older who have intellectual disabilities and are interested in participating in precision medicine initiatives.
Not a fit: Patients who do not have intellectual disabilities or are under the age of 21 may not receive benefits from this research.
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 performed: 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, 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.