Boston Children’s Hospital Study: Neural Markers in Fragile X Syndrome

  • Condition: Fragile X Syndrome
  • Age: Child
  • Sex: Male, Female

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. 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).

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.

Who can participate?

  • 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 happen in the study?

  • 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.

Will I or my child be paid to complete this study?

  • 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