National Down Syndrome Cohort Coordinating Hub
Down Syndrome Clinical Cohort Coordinating Center (DS-4C) for the INCLUDE Project
['FUNDING_OTHER'] · RESEARCH TRIANGLE INSTITUTE · NIH-11195656
This project creates a national network to collect health data and biospecimens from people with Down syndrome across their lives to help researchers improve care.
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-11195656 on ClinicalTrials.gov |
What this research studies
From your perspective, this coordinating hub brings together multiple clinical sites to follow people with Down syndrome and gather the same health measurements, surveys, and biological samples. The team will create one common protocol so every site collects matching information and then securely combines those data in a central repository. Outreach staff will work with families and communities to include people of different ages and backgrounds. The combined dataset and samples will be shared with researchers to support studies aimed at common health conditions in Down syndrome and future clinical trials.
Who could benefit from this research
Good fit: People of any age with Down syndrome and their families who are willing to attend participating sites or engage remotely and to share medical information and biospecimens are ideal candidates.
Not a fit: People without Down syndrome or those expecting an immediate treatment benefit should not expect direct clinical benefit from this cohort-building effort.
Why it matters
Potential benefit: If successful, this effort could speed research into Down syndrome health issues and lead to better prevention, care, and treatments.
How similar studies have performed: Smaller Down syndrome cohorts and prior INCLUDE activities have provided useful data, and this coordinating center expands those efforts by harmonizing and scaling data and sample collection nationally.
Where this research is happening
RESEARCH TRIANGLE PARK, UNITED STATES
- RESEARCH TRIANGLE INSTITUTE — RESEARCH TRIANGLE PARK, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: ALLEN, EMILY GRAVES — RESEARCH TRIANGLE INSTITUTE
- Study coordinator: ALLEN, EMILY GRAVES
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.