Coordinating a nationwide Down syndrome health and biospecimen cohort
Down Syndrome Clinical Cohort Coordinating Center (DS-4C) for the INCLUDE Project
This project will build a unified network to collect health information and biological samples from people with Down syndrome to support better care and future treatments.
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-11195658 on NIH RePORTER |
What this research studies
From your perspective, the team is creating a coordinated network of clinic sites that will use the same protocol to collect detailed health information and biospecimens from people with Down syndrome of all ages. They will manage outreach to diverse communities, enroll participants at multiple sites, and make de-identified data and samples available to qualified researchers through the INCLUDE Data Coordinating Center. Core teams will handle administration, cohort operations, outreach, and data management to keep procedures harmonized and protect participant privacy. This work is intended to create a large, shared resource so new studies can more quickly answer questions about conditions that affect people with Down syndrome.
Who could benefit from this research
Good fit: Ideal participants are people with Down syndrome of any age (and their caregivers) who can share health information and, when willing, provide biospecimens through participating sites.
Not a fit: People without Down syndrome or those unable or unwilling to enroll at a participating site or provide consent/samples are unlikely to get direct benefit from joining.
Why it matters
Potential benefit: If successful, this resource could speed research into Down syndrome health issues and lead to better prevention, diagnosis, and treatments over time.
How similar studies have performed: Other disease-focused cohort networks have successfully accelerated discovery and treatment development, and this project applies those lessons specifically to Down syndrome on a larger coordinated scale.
Where this research is happening
Research Triangle Park, United States
- Research Triangle Institute — Research Triangle Park, United States (Active)
Researchers
- Principal investigator: Rosser, Tracie C — Research Triangle Institute
- Study coordinator: Rosser, Tracie C
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.