Fragile X Syndrome: Growing Up and Young Adulthood
FXS: Late Adolescence and Early Adulthood
['FUNDING_R01'] · UNIVERSITY OF KANSAS LAWRENCE · NIH-11141066
This project follows children with Fragile X Syndrome and their mothers as they transition into young adulthood to understand how their lives unfold.
Quick facts
| Phase | ['FUNDING_R01'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | UNIVERSITY OF KANSAS LAWRENCE (nih funded) |
| Locations | 1 site (LAWRENCE, UNITED STATES) |
| Trial ID | NIH-11141066 on ClinicalTrials.gov |
What this research studies
This project continues to follow individuals with Fragile X Syndrome and their mothers, observing how they adapt to young adulthood. We are looking at how factors measured since early childhood, like sex, autism symptoms, and family interactions, influence living arrangements, employment, and overall quality of life. We also continue to follow mothers who carry the premutation, as they navigate their own aging and their child's transition out of school. This long-term approach helps us understand the complex interplay of biology, behavior, and environment over time.
Who could benefit from this research
Good fit: Ideal candidates are individuals with Fragile X Syndrome and their mothers who have been participating in this longitudinal project since early childhood.
Not a fit: Patients not currently enrolled in this specific long-term project would not directly benefit from its ongoing data collection.
Why it matters
Potential benefit: This research could help us better understand the long-term development of individuals with Fragile X Syndrome and their families, leading to improved support and services as they enter adulthood.
How similar studies have performed: This is a continuation of a successful longitudinal project, building on previous findings about the dynamic influences on individuals with Fragile X Syndrome.
Where this research is happening
LAWRENCE, UNITED STATES
- UNIVERSITY OF KANSAS LAWRENCE — LAWRENCE, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: BRADY, NANCY CAROLINE — UNIVERSITY OF KANSAS LAWRENCE
- Study coordinator: BRADY, NANCY CAROLINE
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.