Down Syndrome Clinical Cohort Coordinating Center for INCLUDE Project
Official title: Down Syndrome Clinical Cohort Coordinating Center (DS-4C) for the INCLUDE Project
Funded at Research Triangle Institute · NIH-11417539 · Data updated 2026-11-12
A national coordinating center will unite and harmonize data and biospecimens from DS cohorts to advance health research for individuals with Down syndrome.
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) | $617,603 |
| NIH project number | 5U54HL178351-03 |
| Project ID | NIH-11417539 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with Down syndrome who participate in INCLUDE project cohort sites and biospecimen collection efforts.
✕Less likely to help
Patients outside the INCLUDE DS cohorts or those not enrolled in the DS-CDP may not directly benefit.
What this research studies
This grant funds a central hub to align data collection across multiple Down syndrome cohorts, ensuring a common protocol and smooth data transfer to a shared resource. It supports leadership, administration, outreach, and data management to build a large, deeply phenotyped DS cohort spanning the lifespan. The goal is to make it easier for researchers to study DS-related conditions and improve health outcomes for people with DS.
Why it matters
Potential benefit: If successful, this center could enable faster, higher-quality research on health issues affecting people with Down syndrome and inform better care practices.
How similar studies have gone: This approach builds on established multi-site data harmonization efforts, with a clear plan to standardize data and specimens across DS cohorts.
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.