Health and Life Journeys for Adults with Fragile X Syndrome
Adults with Fragile X Syndrome: Health and Life Course Trajectories
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 ID | NIH-11128632 on NIH RePORTER |
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.
Who could benefit from this research
Good fit: 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.
Not a fit: Patients who are not adults or do not have Fragile X Syndrome would not directly benefit from this specific research.
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 performed: 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
Madison, United States
- University of Wisconsin-Madison — Madison, United States (Active)
Researchers
- Principal investigator: Dawalt, Leann Smith — University of Wisconsin-Madison
- Study coordinator: Dawalt, Leann Smith
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 below.