Understanding Fragile X Syndrome as Children and Young Adults Grow
Characterizing the Natural History of Fragile X Syndrome to Inform the Development of Intervention,Outcome Measures
This project collects detailed information about how Fragile X Syndrome affects children and young adults over time to help create better support and treatments.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Rush University Medical Center NIH-funded |
| Lab location | 1 site (Chicago, United States) |
| Project ID | NIH-11126511 on NIH RePORTER |
What this research studies
This project aims to gather detailed, long-term information about children and young adults with Fragile X Syndrome, including those with autism and from diverse backgrounds across the U.S. We want to understand how their thinking, behavior, and daily living skills change as they grow. This also includes looking at how early support and services connect with their development. Additionally, we will explore the daily challenges and emotional impact on families caring for someone with Fragile X Syndrome.
Who could benefit from this research
Good fit: Children and young adults with Fragile X Syndrome, along with their caregivers and siblings, are ideal candidates for this information-gathering effort.
Not a fit: Patients who do not have Fragile X Syndrome or are not in the specified age range may not directly benefit from participating in this particular data collection.
Why it matters
Potential benefit: This work could lead to more effective interventions and better ways to measure progress, ultimately improving the lives of individuals with Fragile X Syndrome and their families.
How similar studies have performed: This project builds upon an existing registry (FORWARD) and coordinates with other large-scale studies, suggesting a foundation of prior success in collecting similar data.
Where this research is happening
Chicago, United States
- Rush University Medical Center — Chicago, United States (Active)
Researchers
- Principal investigator: Berry-Kravis, Elizabeth Mara — Rush University Medical Center
- Study coordinator: Berry-Kravis, Elizabeth Mara
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 below.