About the Study
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 Fragile X syndrome. Our goal is to find brain markers that predict cognitive, language, and behavioral difficulties in young boys and girls with Fragile X syndrome, and to better understand differences in brain activity between children with and without Fragile X syndrome.
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 I do?
- Single four 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 I 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.
Research Contact:
Carol Wilkinson
FXSNeuralMarkers@childrens.harvard.edu
For more information, please visit Autism Biomarkers Consortium for Clinical Trials. If you are unfamiliar with EEGs, watch the Labs of Cognitive Neuroscience overview video.
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
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Study: iBehavior- A Novel Behavior Tracking App Study for individuals with Fragile X syndrome
The T-PAL Lab at the UC Davis MIND Institute is conducting a research study to learn about how we can best measure your child’s behavioral and cognitive functioning in their day-to-day life. Using an iPhone or Android based mobile app at your convenience, you will record your child’s behavior daily for up to 3 weeks. About the Study Who can participate? Parents with a child 5-17 years old with a [...]
Study: Transitioning to Adulthood with Fragile X syndrome
University of Kansas’ LifeSpan Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, as well as the experiences of parents of these young adults.
Study: Autonomic and Sensory Functioning in Infants with FMR1 Conditions
Dr. Jane Roberts and the research staff at the Neurodevelopmental Disorders Laboratory at USC are conducting a research study to learn about the development of infants with Fragile X syndrome and Fragile X premutation over the first few years of life.
Study: Language Study for Children and Adolescents with Fragile X syndrome
Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.