Adults with Fragile X Syndrome: Health and Life Course Across Adulthood
Official title: Adults with Fragile X Syndrome: Health and Life Course Trajectories
Funded at University of Wisconsin-Madison · NIH-11345941 · Data updated 2026-11-12
A long-term study following adults with Fragile X Syndrome to understand how their health and daily lives change from early adulthood through older age.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Wisconsin-Madison NIH-funded |
| Lab location | 1 site (Madison, United States) |
| Project start | September 1, 2015 |
| Project end | May 31, 2028 |
| Funding year | 2026 |
| Award (this year) | $622,912 |
| NIH project number | 5R01HD082110-09 |
| Project ID | NIH-11345941 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adults aged 18 and older diagnosed with Fragile X Syndrome, plus a demographically diverse sample drawn from participating health systems.
✕Less likely to help
Individuals without Fragile X Syndrome or those not receiving care within the participating health systems may not directly benefit.
What this research studies
This project continues a large, multi-site effort to follow adults with Fragile X Syndrome over many years. Researchers will look at health problems, health care use, and daily functioning to map how FXS affects people as they age. The study uses real-world data from electronic health records to compare adults with FXS to peers without the condition. It aims to identify factors that improve or worsen health and behavior in adulthood, information that could guide future care and support.
Why it matters
Potential benefit: Findings could help families and clinicians anticipate health needs and tailor lifelong care for adults with Fragile X Syndrome.
How similar studies have gone: Previous work has described childhood FXS; this study is among the first to robustly examine adulthood and aging in FXS.
Where this research is happening
-
University of Wisconsin-Madison
Madison, United States Active
Researchers
- Principal investigator: Dawalt, Leann Smith — University of Wisconsin-Madison
- Study coordinator: Dawalt, Leann Smith
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.
-
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.