Why some children with Down syndrome have very low early thinking skills
Official title: Risk for Severe/Profound Intellectual Disability in Down Syndrome
Funded at Colorado State University · NIH-11181508 · Data updated 2026-11-12
Researchers will follow a group of young children with Down syndrome over three years to learn which medical, behavior, and blood markers link to very low early cognitive skills.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Colorado State University NIH-funded |
| Lab location | 1 site (Fort Collins, United States) |
| Project start | September 4, 2024 |
| Project end | August 31, 2029 |
| Funding year | 2025 |
| Award (this year) | $671,521 |
| NIH project number | 5R01HD113720-02 |
| Project ID | NIH-11181508 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal participants are children with Down syndrome around 12 months old who can return for follow-up visits at 24 and 36 months, along with a caregiver willing to provide medical history and blood samples.
✕Less likely to help
Older children or adults with Down syndrome, or families unwilling/unable to attend in-person visits or provide blood samples, are unlikely to benefit directly from this project.
What this research studies
If your child has Down syndrome, this project will invite families to join a three-visit program when the child is about 12, 24, and 36 months old. At each visit your child will complete standard cognitive and developmental tests, caregivers will provide medical and behavior history, and a small blood sample will be taken. The team will look for connections between severe early delays and things like inflammation markers, signs of neurodegeneration, growth-hormone/IGF1 patterns, and metabolic changes. The aim is to better understand why some children show the most pronounced early delays so future supports can be targeted.
Why it matters
Potential benefit: If successful, the work could help spot children at highest risk earlier and point to biological or behavioral targets for earlier support.
How similar studies have gone: Previous developmental studies in Down syndrome exist but often underrepresent children with severe or profound delays, so this focused longitudinal approach is relatively novel.
Where this research is happening
-
Colorado State University
Fort Collins, United States Active
Researchers
- Principal investigator: Fidler, Deborah J — Colorado State University
- Study coordinator: Fidler, Deborah J
Related research
Other NIH-funded projects on the same topics.
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Understanding early cognitive skills in children with Down syndrome
We’re studying how early thinking skills develop in young children with Down syndrome and what factors influence severe intellectual disability later on.
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Understanding cognitive development in children with Down syndrome
This study is looking at how children with Down syndrome, especially those with more severe intellectual challenges, grow and learn over time, and it aims to find out what helps or hinders their cognitive development, so we can better understand their unique abilities.
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Understanding genetic causes of intellectual disability across diverse populations
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Step It Up+: helping adults with intellectual disability be more active
This 16-week program helps adults with intellectual disability use goal-setting, a web dashboard, and a support coach to increase daily steps and aerobic and strength activity.
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Understanding brain responses in children with autism and intellectual disability
This project uses child-friendly EEG and eye-tracking to measure brain responses and looking patterns in 6–11-year-old children with autism and intellectual disability.
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.