Down Syndrome Clinical Cohort Coordinating Center for INCLUDE
Official title: Down Syndrome Clinical Cohort Coordinating Center (DS-4C) for the INCLUDE Project
Funded at Research Triangle Institute · NIH-11417542 · Data updated 2026-11-12
A nationwide effort to coordinate and harmonize data and biospecimens for people with Down syndrome to help researchers understand DS health 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 start | September 20, 2024 |
| Project end | August 31, 2029 |
| Funding year | 2026 |
| Award (this year) | $1,103,108 |
| NIH project number | 5U54HL178351-03 |
| Project ID | NIH-11417542 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with Down syndrome who may participate indirectly as data and biospecimen contributors through DS research sites and INCLUDE PROGRAM activities.
✕Less likely to help
Participants not enrolled in or contributing to the DS Cohort Development Program may not directly benefit.
What this research studies
The DS-4C will coordinate the INCLUDE Project’s DS Cohort Development Program, creating a common protocol for data collection across multiple sites and securely transferring data to a central hub. It will oversee four cores—Administrative, Cohort, Outreach, and Data Management—to support collaboration, outreach, and high-quality data management. By building a unified network and deep phenotyping with biospecimens, this center aims to enable future studies that address Down syndrome-associated health challenges. This project emphasizes partnerships with DS research sites and a robust infrastructure to speed translational discoveries while safeguarding participant data and samples.
Why it matters
Potential benefit: If successful, this initiative could accelerate understanding of Down syndrome health issues and improve care by providing researchers with harmonized data and samples from a large, diverse DS population.
How similar studies have gone: Similar national cohorts with harmonized data collection have advanced Down syndrome research and related health insights.
Where this research is happening
-
Research Triangle Institute
Research Triangle Park, United States Active
Researchers
- Principal investigator: Rosser, Tracie C — Research Triangle Institute
- Study coordinator: Rosser, Tracie C
Related research
Other NIH-funded projects on the same topics.
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Exploring how Down syndrome affects optic nerve health in kids
A study using a mouse model to understand why optic nerve problems are common in children with Down syndrome and how to prevent them.
-
Executive Function Enhancement for Young Children with Down Syndrome
A caregiver-guided program for kids with Down syndrome aged up to 11 to strengthen their thinking skills during early childhood.
-
Silencing an Extra Chromosome to Help Down Syndrome and Related Conditions
A patient-friendly plan to use a gene-based approach to quiet an extra chromosome in cells and a mouse model to reduce disease-related effects in Down syndrome and other chromosomal imbalance disorders.
-
Infant Down Syndrome Brain and Behavior Study
A study of infants with Down syndrome to collect brain imaging and developmental data, creating a large, shared resource to understand how autism and other factors relate to development.
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DS-ARC: Smartphone-based cognitive check for people with Down syndrome at risk for Alzheimer’s
A smartphone-based cognitive test is being developed and tested for people with Down syndrome who may develop Alzheimer’s disease, to track changes quietly in daily life.
-
Immune and NGF factors in Alzheimer’s for adults with Down syndrome
This grant studies why people with Down syndrome develop Alzheimer’s disease by looking at immune signals and nerve growth factor problems.
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.