Coordinating care and research for people with Down syndrome
INCLUDE Down Syndrome Clinical Cohort Coordinating Center (DS-4C)
This project is building a national network that collects health information and biological samples from people with Down syndrome to help researchers learn how to improve care across the lifespan.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Research Triangle Institute NIH-funded |
| Lab location | 1 site (Research Triangle Park, United States) |
| Project ID | NIH-11195651 on NIH RePORTER |
What this research studies
If you join, your medical information and, if you agree, blood or other biospecimens would be collected using the same protocol used at multiple participating sites. A central coordinating center will train sites, manage data, and make de-identified information available to approved researchers through the INCLUDE Data Hub. The team will run outreach to include people from diverse communities and across all ages, and aims to create a large, harmonized dataset of clinical measures and samples for future Down syndrome research.
Who could benefit from this research
Good fit: People of any age with Down syndrome and their caregivers who are willing to share health information and, when asked, provide biospecimens are the ideal candidates.
Not a fit: People without Down syndrome or those unwilling to share medical data or samples would not benefit directly from participating, and enrollment is intended to help future research rather than provide immediate clinical treatment.
Why it matters
Potential benefit: Success could speed research into Down syndrome health issues and lead to better screening, treatments, and supports over a person’s lifetime.
How similar studies have performed: National cohort and registry efforts in other conditions have successfully accelerated research, so this coordinating-center model builds on proven approaches rather than being wholly untested.
Where this research is happening
Research Triangle Park, United States
- Research Triangle Institute — Research Triangle Park, United States (Active)
Researchers
- Principal investigator: Hunter, Jessica Ezzell — Research Triangle Institute
- Study coordinator: Hunter, Jessica Ezzell
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.