Down Syndrome Clinical Cohort Coordinating Center for INCLUDE (DS-4C)
Official title: Down Syndrome Clinical Cohort Coordinating Center (DS-4C) for the INCLUDE Project
Funded at Research Triangle Institute · NIH-11417543 · Data updated 2026-11-12
A nationwide effort to coordinate and harmonize data and biospecimens on people with Down syndrome to help researchers understand and improve DS health across life.
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) | $809,076 |
| NIH project number | 5U54HL178351-03 |
| Project ID | NIH-11417543 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with Down syndrome who may participate in DS-CDP cohorts and related biospecimen/sample collection efforts.
✕Less likely to help
People not enrolled in the INCLUDE DS Cohort Development Program or not contributing to DS-focused data collection may not directly benefit.
What this research studies
This grant creates a central coordinating center to unify data collection, sharing, and biospecimen management for a large Down syndrome cohort. It supports standardized protocols across multiple research sites, ensures smooth data transfer to central hubs, and enables deep phenotyping and long-term studies. The DS-4C will be led by RTI International and Emory, with four cores handling administration, cohort operations, outreach, and data management to connect researchers with high-quality DS data and samples.
Why it matters
Potential benefit: If successful, this coordination could accelerate discoveries that improve health outcomes and quality of life for people with Down syndrome.
How similar studies have gone: Similar multi-site DS cohorts and data-sharing efforts have advanced understanding of DS health, though this level of centralized coordination is relatively novel.
Where this research is happening
-
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
Related research
Other NIH-funded projects on the same topics.
-
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.
-
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.