Childhood-to-Adult Brain Changes in Huntington’s Disease with Gene Expansion
Official title: Childhood to Adult Neurodevelopment in Gene-Expanded Huntington’s Disease (ChANGE-HD)
Funded at University of Iowa · NIH-11449130 · Data updated 2026-11-12
A study follows children and young adults who carry or do not carry the Huntington’s disease gene expansion to understand how their brains and thinking change over time.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Iowa NIH-funded |
| Lab location | 1 site (Iowa City, United States) |
| Project start | March 1, 2009 |
| Project end | June 30, 2031 |
| Funding year | 2026 |
| Award (this year) | $596,301 |
| NIH project number | 2R01NS055903-15 |
| Project ID | NIH-11449130 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children and young adults who are gene-expanded (≥36 CAG repeats) or gene non-expanded (<36) and are at risk for Huntington’s disease.
✕Less likely to help
Individuals without Huntington’s disease risk or without long-term participation in follow-up assessments may not directly benefit.
What this research studies
This project looks at how Huntington’s disease develops from childhood into adulthood in people with gene-expanded HTT and those without. It uses data from a large, multi-site cohort to track brain size, metabolism, and cognitive function across many years. The goal is to identify early brain and cognitive changes that could signal when symptoms may begin so families and clinicians can plan ahead. The study builds on prior work with Kids-HD and the broader ChANGE-HD effort, focusing on younger participants at risk. Participation would involve regular assessments and noninvasive tests over time.
Why it matters
Potential benefit: If successful, the research could improve early detection and monitoring of Huntington’s disease in at-risk youth and young adults, potentially guiding earlier interventions.
How similar studies have gone: Prior Kids-HD and ChANGE-HD work suggests measurable brain and cognitive differences in at-risk youth, supporting this approach.
Where this research is happening
-
University of Iowa
Iowa City, United States Active
Researchers
- Principal investigator: Nopoulos, Peggy C — University of Iowa
- Study coordinator: Nopoulos, Peggy C
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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.