The purpose of this study is to improve our understanding of how differences in brain activity affect learning, language, and behavior in children with Fragile X Syndrome (FXS). Currently, there is no effective treatment for FXS. Our goal is to find brain markers that predict cognitive, language, and behavioral difficulties in young boys and girls with FXS, and to better understand differences in brain activity between children with and without FXS.
Now includes boys and girls.
Eligibility for Study Participation
- 32-84 months old with a diagnosis of Fragile X Syndrome based on full mutation of the FMR1 gene.
- 32-84 months old who are typically developing.
What will you do?
- Single 4 hour visit at the Labs of Cognitive Neuroscience at Boston Children’s Hospital.
- This visit includes clinical and behavioral assessments that will evaluate your child’s thinking, motor skills, language skills, and social communication. In addition, we will measure your child’s brain activity using electroencephalography (EEG).
- EEG is a safe and radiation-free way to measure brain activity in response to different sounds and pictures.
What will you receive?
- Families will receive a small toy and $25 for participating and a summary report of the behavioral assessments completed during the visit.
- We will provide free parking and childcare for siblings.
This study is generously funded by the FRAXA Research Foundation, the Pierce Family Fragile X Foundation, the Autism Science Foundation, the Thrasher Pediatric Research Foundation, and the Society for Developmental Behavioral Pediatrics, with research participation recruitment assistance provided by the National Fragile X Foundation.
Our Most Recent Opportunities
The Research in Neurodevelopmental Disabilities Lab at the Waisman Center at the University of Wisconsin-Madison is looking for parents of male or female children 6 to 17 years old with Fragile X syndrome for an online survey.
RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.
Doctors at Rush University are researching cognition, balance, and walking patterns in people who carry a premutation in the Fragile X (FMR1) gene.
The University of South Carolina is conducting a research study focusing on the range of language, social, and cognitive features that may be associated with variations on the FMR1 gene. Women age 35-75 who are carriers of the Fragile X premutation may be eligible to participate.