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
If you arrived on this page through a MyFXResearch Portal search, you can close this window and return to your filtered results. Or start a new search here.

FXS TECH Study

Researchers at Rush University Medical Center are working on technology to improve how to identify and track progress in children living with autism and Fragile X syndrome. The study is currently recruiting children ages 18 months to 5 years, and 12-18 years.

Study: Web Intervention for Parents of Youth with Genetic Syndromes (WINGS)

Researchers at the Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center are currently conducting a fully-virtual research study that is testing two telehealth interventions that are designed to help parents of children with genetic syndromes and intellectual disabilities gain strategies to manage challenging behaviors.

Brain & Behavior Study

Researchers at Purdue University are conducting a natural history research study to learn about brain activity in females, ages18-60 years, living with the FMR1 premutation.