Understanding Fragile X Syndrome as Children and Young Adults Grow
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-11126511 · Data updated 2026-11-12
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 start | September 1, 2021 |
| Project end | August 31, 2026 |
| Funding year | 2025 |
| Award (this year) | $800,000 |
| NIH project number | 5U01DD001298-05 |
| Project ID | NIH-11126511 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children and young adults with Fragile X Syndrome, along with their caregivers and siblings, are ideal candidates for this information-gathering effort.
✕Less likely to help
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.
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.
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 gone: 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
-
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.