Understanding Fragile X Syndrome: How it progresses and affects daily life
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-11623438 · Data updated 2026-11-12
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.
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 | June 30, 2027 |
| Funding year | 2025 |
| Award (this year) | $500,000 |
| NIH project number | 6U01DD001298-05M002 |
| Project ID | NIH-11623438 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children and young adults with Fragile X syndrome (including those with and without autism) across diverse racial/ethnic groups and locations in the U.S.
✕Less likely to help
Individuals without Fragile X syndrome or without long-term follow-up participation would not directly benefit.
What this research studies
This project will build on FORWARD to collect detailed, long-term information about people with Fragile X syndrome. It will track cognitive, behavioral, and daily functioning over time and see how diagnosis history, early interventions, and access to services relate to outcomes. The study will also look at the practical and emotional impact on families and siblings, using in-person assessments and follow-up surveys. Data will be securely stored and coordinated with the SEED Follow-up Study to broaden understanding across diverse groups in the U.S.
Why it matters
Potential benefit: If successful, the findings could help tailor interventions and support services to improve planning, care, and quality of life for individuals with Fragile X and their families.
How similar studies have gone: Previous registry work like FORWARD has laid groundwork; this study expands longitudinal data to inform future interventions and outcome measures.
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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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.
-
Understanding anxiety in Fragile X syndrome across childhood
A study follows children and young people with Fragile X syndrome to understand how anxiety starts, stays, and what predicts it over time.
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.