Available Non-Drug Studies (In Age Order)

For our non-drug studies, in most cases we are enrolling human subjects who match the age and sex of patients with fragile X to serve as “control” or comparison subjects. Specific testing and games vary per study.

Infant and Toddler Brain Function Study

Who: Infants and young toddlers with FXS What: Multiple language measures & assessments, EEG, fNIRS Why: This study uses a cap that monitors blood flow and electrical activity in the brain while the participant listens to sounds. The study’s goal is to find a link between brain activity and language impairment.

MRI Brain Imaging

Who: Any child over 3 months old with FXS What: MRI, EEG, cognitive/developmental testing, blood draw (optional) Why: This study’s goal is to learn more about brain structure, function, and development in people with developmental disabilities.

Characterizing the Biology of FXS

Who: Anyone What: A wide variety of optional tasks, including blood draws, cognitive testing, neuropsychological games, parent measures, EEG, MRI, eye tracking tasks
Why: The purpose of this study is to help us understand the biology of FXS by comparing data from people with FXS to typically developing individuals and individuals with other neurodevelopmental disorders.

FORWARD MARCH Study

Who: People with FXS born between 2003 and 2017 What: Parent measures, cognitive testing and clinician forms during regularly scheduled clinic visits Why: The purpose of this research study is to create a way to collect and combine data about people with fragile X syndrome (FXS) from clinics across the United States. This data will help establish the best ways to evaluate and treat people with FXS.

Computer-Based Cognitive Testing

Who: People 4+ years old who have intellectual disabilities What: Parent measures, cognitive testing, neuropsychological games Why: The goal of this study is to develop ways to measure cognition, in hopes we can use these in future clinical trials to help us understand which treatments work.

New Parent-Report Measure of Inflexibility in FXS

Who: Caregiver of individual with FXS What: Parent measures Why: Behavioral inflexibility is common in FXS and greatly impacts daily life. We developed a measure to better capture this symptom and need to test it out.

EEG Study of Brain Activity

Who: People 8-12 years old or 18+ with FXS and IQ < 85 OR typically developing controls What: Clinical assessments, parent measures, cognitive testing, neuropsychological games, EEG and eye tracking tasks Why: This study is looking at how the brain works and changes over time in FXS. It is a correlational study that enrolls individuals with FXS, their family members, and control groups.

Study of Cognition and Language in Adults with FXS

Who: Right-handed people 18-36 years old with FXS and IQ <70 What: Blood draw, parent measures, cognitive and language testing, neuropsychological games, and EEG tasks
Why: This study’s goal is to better understand the brain basis of specific cognitive and language impairments in FXS.

Study of Visual Perception in Males with FXS

Who: Males with FXS 18-55 years old with IQ < 75 What: Parent measures, cognitive testing, and EEG tasks Why: This study aims to learn more about how distracting sensory stimuli impact behavior and brain activity.

HealX study