Why some children with Down syndrome have very low early thinking skills

Risk for Severe/Profound Intellectual Disability in Down Syndrome

NIH-funded research Colorado State University · NIH-11181508

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 typeR01 grant
Study typeNIH-funded research
Funding institutionColorado State University NIH-funded
Lab location1 site (Fort Collins, United States)
Project IDNIH-11181508 on NIH RePORTER

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.

Who could benefit from this research

Good fit: 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.

Not a fit: 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.

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 performed: 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

Fort Collins, United States

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Conditions Autistic Disorder
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.