Understanding the development and challenges of Fragile X Syndrome in children and young adults
Characterizing the Natural History of Fragile X Syndrome to Inform the Development of Intervention,Outcome Measures
This study is looking to learn more about how children and young adults with Fragile X Syndrome grow and develop, while also understanding how it affects their families, so we can improve support and services for everyone involved.
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-11013778 on NIH RePORTER |
What this research studies
This research aims to gather detailed information about the experiences and developmental progress of children and young adults with Fragile X Syndrome (FXS). By utilizing the Fragile X Online Registry With Accessible Research Database (FORWARD), the study will track cognitive, behavioral, and adaptive skills over time, as well as the impact of early interventions and access to services. It will also assess the effects of FXS on caregivers and siblings, providing a comprehensive view of the syndrome's impact on families. The data collected will help inform future interventions and outcome measures for those affected by FXS.
Who could benefit from this research
Good fit: Ideal candidates for this research include children and young adults diagnosed with Fragile X Syndrome, as well as their caregivers and siblings.
Not a fit: Patients without a diagnosis of Fragile X Syndrome or those who are not part of the affected families may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved interventions and support strategies for individuals with Fragile X Syndrome and their families.
How similar studies have performed: Previous research has shown success in characterizing developmental trajectories in similar genetic conditions, indicating that this approach has potential for meaningful insights.
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.