National hub organizing a Down syndrome clinical cohort and shared data
Down Syndrome Clinical Cohort Coordinating Center (DS-4C) for the INCLUDE Project
['FUNDING_OTHER'] · RESEARCH TRIANGLE INSTITUTE · NIH-11195661
This project will build and connect a large, diverse group of people with Down syndrome so researchers can collect consistent health information and biospecimens to speed future research.
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-11195661 on ClinicalTrials.gov |
What this research studies
If I take part, this project would bring together many clinics and research sites to follow people with Down syndrome using the same protocol so everyone’s information can be compared. The coordinating center will help enroll participants, support outreach to make the group diverse and inclusive, and guide collection of health data and biological samples. Data and samples will be sent to a central data hub so qualified researchers can use them for future studies. The DS-4C team will also manage communication between sites and make sure the process follows privacy and ethical rules.
Who could benefit from this research
Good fit: Ideal candidates are people with Down syndrome of any age and their families who can share health information, participate in visits, and, when possible, provide biospecimens.
Not a fit: People without Down syndrome, those unwilling to share health data or provide samples, or anyone seeking immediate medical treatment may not receive direct benefit from participating.
Why it matters
Potential benefit: If successful, the project could speed discovery about health issues in Down syndrome and make it easier for people to join future clinical studies.
How similar studies have performed: Similar national cohort and data-sharing efforts in other conditions have accelerated research, but this coordinated, large-scale DS cohort is a novel, dedicated effort for Down syndrome.
Where this research is happening
RESEARCH TRIANGLE PARK, UNITED STATES
- RESEARCH TRIANGLE INSTITUTE — RESEARCH TRIANGLE PARK, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: AUMAN, JEANETTE O'DONNELL — RESEARCH TRIANGLE INSTITUTE
- Study coordinator: AUMAN, JEANETTE O'DONNELL
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.