National hub connecting Down syndrome clinics, researchers, and families
Down Syndrome Clinical Cohort Coordinating Center (DS-4C) for the INCLUDE Project
This project builds a national network to collect health information and biosamples from people with Down syndrome to help 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-11195652 on NIH RePORTER |
What this research studies
From your perspective, the project is creating a single coordinated network that brings together multiple clinical sites, standardizes how visits and tests are done, and collects health data and biological samples from people with Down syndrome. It will develop a common protocol so all participating sites gather the same measurements, support outreach to enroll a diverse group of participants, and manage secure data transfer into the INCLUDE data hub for researcher use. The coordinating center will also handle administrative tasks, train site staff, and help communicate results back to communities and families. Over several years this centralized effort aims to build a large, deeply characterized cohort that could support new studies and trials for DS-related health issues.
Who could benefit from this research
Good fit: Ideal candidates are individuals with Down syndrome of any age and their families who can visit participating clinical sites or provide data and consent for biospecimen collection.
Not a fit: People without Down syndrome or those unable or unwilling to provide consent, travel to study sites, or share health information are unlikely to benefit directly from participating.
Why it matters
Potential benefit: If successful, this may speed up research into Down syndrome-related health problems and make it easier to find better treatments and care recommendations.
How similar studies have performed: Coordinating centers and common-protocol cohort programs in other fields have successfully accelerated research, and the INCLUDE initiative is building on those proven consortia models.
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.