Improving health and well-being for individuals with Down syndrome
Official title: Down Syndrome Clinical Cohort Coordinating Center (DS-4C) for the INCLUDE Project
Funded at Research Triangle Institute · NIH-11015425 · Data updated 2026-11-12
This study is working to improve the health and well-being of people with Down syndrome by gathering important information and samples from a large group of participants, which will help researchers better understand and address related health issues.
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 | 2024 |
| Award (this year) | $100,862 |
| NIH project number | 1U54HL178351-01 |
| Project ID | NIH-11015425 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for participation include individuals of all ages with Down syndrome who are willing to contribute to research efforts.
✕Less likely to help
Patients without Down syndrome or those who are unable to participate in data collection efforts may not benefit from this research.
What this research studies
This research aims to enhance the health and quality of life for individuals with Down syndrome by coordinating a comprehensive data collection and research program. The INCLUDE Clinical Cohort Coordinating Center (DS-4C) will oversee the development of a unified protocol for data collection across various research sites, ensuring that data is harmonized and accessible for future studies. By creating a large, diverse cohort and collecting detailed phenotyping data and biospecimens, the project seeks to address co-morbidities associated with Down syndrome and support ongoing research efforts.
Why it matters
Potential benefit: If successful, this research could lead to improved health outcomes and targeted interventions for individuals with Down syndrome.
How similar studies have gone: Previous research initiatives focusing on coordinated data collection in similar populations have shown promise in improving health outcomes and advancing understanding of genetic conditions.
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.
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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.
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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.