Health and Life Journeys for Adults with Fragile X Syndrome
Official title: Adults with Fragile X Syndrome: Health and Life Course Trajectories
Funded at University of Wisconsin-Madison · NIH-11128632 · Data updated 2026-11-12
This project looks at the health and daily lives of adults with Fragile X Syndrome to understand how their condition changes over time.
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 | 2025 |
| Award (this year) | $597,366 |
| NIH project number | 5R01HD082110-08 |
| Project ID | NIH-11128632 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this type of research would be adults diagnosed with Fragile X Syndrome, particularly those whose health records are part of the participating healthcare systems.
✕Less likely to help
Patients who are not adults or do not have Fragile X Syndrome would not directly benefit from this specific research.
What this research studies
Fragile X Syndrome is an inherited condition that causes intellectual disability and autism, with effects lasting a lifetime. While much is known about children with Fragile X, there's less understanding of how the condition affects adults. This project aims to fill that gap by following adults with Fragile X Syndrome to see how their health and behavior change as they get older. We hope to discover factors that either help or worsen their well-being during adulthood, providing crucial insights into this often-overlooked period of life.
Why it matters
Potential benefit: This work could help us better understand the unique health challenges and needs of adults with Fragile X Syndrome, leading to improved care and support strategies.
How similar studies have gone: This project is novel in its robust focus on adults with Fragile X Syndrome, as most previous research has concentrated on children.
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.
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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.