Down syndrome health study hub coordinating center
Official title: INCLUDE Down Syndrome Clinical Cohort Coordinating Center (DS-4C)
Funded at Research Triangle Institute · NIH-11417521 · Data updated 2026-11-12
A national program to improve health for people with Down syndrome by coordinating data, biospecimens, and outreach across many sites.
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) | $3,856,009 |
| NIH project number | 5U54HL178351-03 |
| Project ID | NIH-11417521 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with Down syndrome and their families who may participate in the DS cohorts or related biospecimen collection programs.
✕Less likely to help
This grant does not directly test a treatment or enroll patients in a separate trial; participation depends on DS-specific cohort activities and biospecimen programs.
What this research studies
This project creates a centralized coordinating center to harmonize data collection, biospecimen sharing, and collaboration for a large Down syndrome cohort. It will develop a common protocol for data across multiple research sites and ensure data can flow securely to a central data hub for researchers. The effort includes administrative leadership, cohort management, outreach to communities, and comprehensive data management to support future studies improving DS-associated health issues.
Why it matters
Potential benefit: It could enable faster, more reliable research to understand and improve health problems common in Down syndrome across the lifespan.
How similar studies have gone: Past large consortia have shown that standardized data collection and data sharing improve research quality and speed.
Where this research is happening
-
Research Triangle Institute
Research Triangle Park, United States Active
Researchers
- Principal investigator: Hunter, Jessica Ezzell — Research Triangle Institute
- Study coordinator: Hunter, Jessica Ezzell
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.