National hub coordinating Down syndrome health cohorts
Official title: INCLUDE Down Syndrome Clinical Cohort Coordinating Center (DS-4C)
Funded at Research Triangle Institute · NIH-11414818 · Data updated 2026-11-12
This project brings together clinical sites and researchers to collect health information and biological samples from people with Down syndrome across their lives so care can improve.
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 | 2025 |
| Award (this year) | $1,999,989 |
| NIH project number | 3U54HL178351-02S1 |
| Project ID | NIH-11414818 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with Down syndrome across the lifespan who are willing to share medical information and, when asked, provide biological samples would be ideal candidates for participation through network sites.
✕Less likely to help
People without Down syndrome, those unwilling to share medical data or provide samples, or those unable to access participating clinical sites would not directly benefit from joining this effort.
What this research studies
From your perspective, this center organizes and connects multiple Down syndrome research sites to use the same procedures for collecting medical information and biospecimens. It develops a common protocol so data from different locations can be combined and compared. The center also manages data flow, supports outreach to communities and clinicians, and helps share data with qualified researchers. Together these steps aim to build a large, well-characterized group of people with Down syndrome to support future discoveries.
Why it matters
Potential benefit: If successful, this coordination could speed research that leads to better understanding, treatments, and care practices for health issues that affect people with Down syndrome.
How similar studies have gone: Coordinated cohort efforts in other diseases have successfully created shared datasets that accelerated research, though large, harmonized Down syndrome cohorts are still being built out.
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.
-
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.