National hub coordinating Down syndrome health cohorts
INCLUDE Down Syndrome Clinical Cohort Coordinating Center (DS-4C)
['FUNDING_OTHER'] · RESEARCH TRIANGLE INSTITUTE · NIH-11414818
This project brings together clinical sites and researchers to collect health information and biological samples from people with Down syndrome across their lives so care can improve.
Quick facts
| Phase | ['FUNDING_OTHER'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | RESEARCH TRIANGLE INSTITUTE (nih funded) |
| Locations | 1 site (RESEARCH TRIANGLE PARK, UNITED STATES) |
| Trial ID | NIH-11414818 on ClinicalTrials.gov |
What this research studies
From your perspective, this center organizes and connects multiple Down syndrome research sites to use the same procedures for collecting medical information and biospecimens. It develops a common protocol so data from different locations can be combined and compared. The center also manages data flow, supports outreach to communities and clinicians, and helps share data with qualified researchers. Together these steps aim to build a large, well-characterized group of people with Down syndrome to support future discoveries.
Who could benefit from this research
Good fit: Individuals with Down syndrome across the lifespan who are willing to share medical information and, when asked, provide biological samples would be ideal candidates for participation through network sites.
Not a fit: People without Down syndrome, those unwilling to share medical data or provide samples, or those unable to access participating clinical sites would not directly benefit from joining this effort.
Why it matters
Potential benefit: If successful, this coordination could speed research that leads to better understanding, treatments, and care practices for health issues that affect people with Down syndrome.
How similar studies have performed: Coordinated cohort efforts in other diseases have successfully created shared datasets that accelerated research, though large, harmonized Down syndrome cohorts are still being built out.
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.