FXS: Late Adolescence and Early Adulthood
Funded at University of Kansas Lawrence · NIH-11372967 · Data updated 2026-11-12
A long-term study following children with fragile X syndrome and their mothers as they move from teens into early adulthood, looking at how daily life and family factors affect outcomes.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Kansas Lawrence NIH-funded |
| Lab location | 1 site (Lawrence, United States) |
| Project start | April 1, 2016 |
| Project end | June 30, 2027 |
| Funding year | 2026 |
| Award (this year) | $423,763 |
| NIH project number | 5R01HD084563-10 |
| Project ID | NIH-11372967 on NIH RePORTER |
Who could benefit from this research
✓Could help
Families with a child diagnosed with fragile X syndrome who are transitioning from adolescence to early adulthood and are willing to participate in continued longitudinal follow-up.
✕Less likely to help
Families not currently enrolled in long-term follow-up or those not planning to participate further may see no direct benefit.
What this research studies
This project extends a long-running study to three more data points as children with fragile X syndrome transition into young adulthood. Researchers will track living situations, work status, and quality of life for the young adults, while also watching how maternal aging and family dynamics influence outcomes. The study has shown that biology, behavior, and environment intertwine over time, and will continue to examine these relationships with new factors like transition planning. Data collection will involve families already enrolled in the study, focusing on late adolescence and early adulthood. The work is led by a team at the University of Kansas in collaboration with other experts and will add two data points per dyad.
Why it matters
Potential benefit: Understanding how to support families during the transition to adulthood could inform better services and planning for individuals with fragile X syndrome and their caregivers.
How similar studies have gone: Longitudinal studies in fragile X syndrome have provided valuable insights into how early-life factors relate to adult outcomes, with ongoing research building on established cohorts.
Where this research is happening
-
University of Kansas Lawrence
Lawrence, United States Active
Researchers
- Principal investigator: Brady, Nancy Caroline — University of Kansas Lawrence
- Study coordinator: Brady, Nancy Caroline
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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.