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
IMPACT-FXS: Investigating Multiple Pathways And Combined Treatments for FXS
Healx is conducting a Phase 2, placebo-controlled study in adolescent and adult males with fragile X syndrome (FXS). The purpose of this study is to confirm whether Healx's drug candidates are safe and work as intended to reduce symptoms of FXS.
Survey: Developing a Gold Standard for Tracking Adult Functional Outcomes in Developmental Disabilities (AFS Study)
University of Pittsburgh is conducting this research to develop the Adult Functioning Scale (AFS), a new survey being designed to capture outcomes in the areas of social functioning, employment, independence, and satisfaction for individuals with various developmental disorders.
Study: Aging in Toolbox
Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.
Conference Research Opportunity: Validation of Fragile X-Associated Tremor Ataxia Syndrome Rating Scale (FXTAS-RS)
Rush University is conducting a research study to validate a rating scale created to assess the motor symptoms of people with FXTAS – the “Fragile X-Associated Tremor Ataxia Syndrome Rating Scale (FXTAS-RS)”
Study: Connection between Cognition and Genetic Factors in Adults with FXS
Drs. Craig Erickson and Lauren Schmitt at Cincinnati Children’s Hospital are conducting a series of research studies to learn about the brain and cognition and how they are connected with genetic factors related to FXS.
Study: UNC Brain Development Research Study of Infants with Fragile X Syndrome
UNC Chapel Hill is conducting a research study to learn about the early brain and behavioral development of infants with FXS to aid in the future development of better supports and treatments.