DS-4C: Coordinating Center to unify Down syndrome health research
Official title: Down Syndrome Clinical Cohort Coordinating Center (DS-4C) for the INCLUDE Project
Funded at Research Triangle Institute · NIH-11417540 · Data updated 2026-11-12
A national effort to coordinate a large, long-term study of people with Down syndrome to collect health data and biospecimens that researchers can use to understand and improve DS health across all ages.
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) | $1,326,222 |
| NIH project number | 5U54HL178351-03 |
| Project ID | NIH-11417540 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with Down syndrome across the lifespan who participate in INCLUDE Project DS Cohort Development Program and related DS cohort sites.
✕Less likely to help
Participants not enrolled in the INCLUDE DS cohorts or without DS-related health data collection may see limited direct benefit.
What this research studies
This NIH grant supports a central coordinating center that links multiple DS cohorts, harmonizes data collection, and manages data transfer to a shared platform. It will run four core areas—Administrative, Cohort, Outreach, and Data Management—to ensure consistent protocols, broad outreach, and easy access for researchers. The goal is to create deep, life-spanning phenotyping and biospecimen collection to enable future studies on DS-associated health issues. By coordinating sites across the INCLUDE Project, the center aims to accelerate discoveries that could improve health and quality of life for individuals with Down syndrome.
Why it matters
Potential benefit: If successful, people with Down syndrome could benefit from faster, more coordinated research leading to better understanding and management of DS-related health conditions.
How similar studies have gone: Coordinated data hubs and harmonized protocols in large multi-site studies have enabled more powerful analyses in other conditions, suggesting promise for DS with a similar approach.
Where this research is happening
-
Research Triangle Institute
Research Triangle Park, United States Active
Researchers
- Principal investigator: Allen, Emily Graves — Research Triangle Institute
- Study coordinator: Allen, Emily Graves
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.