Understanding the development and challenges of Fragile X Syndrome in children and young adults
Official title: Characterizing the Natural History of Fragile X Syndrome to Inform the Development of Intervention,Outcome Measures
Funded at Rush University Medical Center · NIH-11013778 · Data updated 2026-11-12
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 start | September 1, 2021 |
| Project end | August 31, 2026 |
| Funding year | 2024 |
| Award (this year) | $800,000 |
| NIH project number | 5U01DD001298-04 |
| Project ID | NIH-11013778 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research include children and young adults diagnosed with Fragile X Syndrome, as well as their caregivers and siblings.
✕Less likely to help
Patients without a diagnosis of Fragile X Syndrome or those who are not part of the affected families may not benefit from this research.
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.
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 gone: 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
-
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
Related research
Other NIH-funded projects on the same topics.
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Understanding Fragile X Syndrome: How it progresses and affects daily life
A long-term study using existing Fragile X data to map how the condition changes over time in children and young adults, including how autism, race, and location influence outcomes.
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Sleep and mood links in Fragile X Syndrome
A short, patient-friendly study to understand how sleep problems relate to mood and depressive symptoms in people with Fragile X–linked autism.
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Connecting 3D genome misfolding to gene silencing in Fragile X syndrome
A study in people with Fragile X syndrome focuses on how 3D genome folding errors may turn off important genes, contributing to the condition’s features.
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Cortical circuit problems in Fragile X mice and people
Researchers are studying how brain circuits go awry in Fragile X syndrome by comparing mice and people to understand why certain brain rhythms and responses are altered.
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Brain biology in fragile X syndrome: how brain signals unfold and vary in patients
This grant supports research to understand brain signals and why symptoms vary in people with fragile X syndrome, aiming to translate findings into better care.
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Brain research on Fragile X Syndrome to improve therapies
A multi-year program studies brain function and differences in Fragile X Syndrome to help develop better treatments for people with FXS.
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.