Does your child with Fragile X syndrome have trouble talking? Help us learn how brain development impacts language growth.
The Wilkinson Lab at the Boston Children’s Hospital Labs of Cognitive Neuroscience is conducting a longitudinal research study to learn about how differences in brain activity affect learning, language, and behavior in Fragile X Syndrome.
About the Study
Who can participate?
Boys ages 2–6 years old with a diagnosis of Fragile X Syndrome based on full mutation of the FMR1 gene may be eligible to participate.
What will happen in the study?
If the individual qualifies and decides to be in this research study, they will come to the Labs of Cognitive Neuroscience at Boston Children’s Hospital for two visits over the course of one year.
There will two visits, each one year apart, at the Labs of Cognitive Neuroscience at Boston Children’s Hospital. Each visit includes:
- Clinical and behavioral assessments to evaluate your child’s thinking, motor skills, language skills, and social communication.
- 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.
- Completion of questionnaires.
What are the good things that can happen from this research?
Being in this research may not help you right now. When we finish the research, we hope that we will know more about both Fragile X syndrome, Down syndrome, and autism spectrum disorder. This may help other children and adults with FXS, DS, or ASD in the future.
You may benefit by receiving detailed information about your child’s cognitive, language, and communication skills.
What are the bad things that can happen from this research?
There are minimal risks to the procedures we are using.
- Children may react negatively to some of the behavioral assessments (e.g., frustration, boredom)
- Children may experience discomfort during the EEG net placement or recording
- Risk of participant confidentiality through creation of video recordings of behavioral and EEG assessments
There may be other risks that we do not know about yet.
Will I or my child be paid to complete this study?
Participants receive $50 and a small toy each visit, as well as a written report about your child’s development. Additionally, we will provide free parking and child care for siblings.
Travel reimbursement up to $350 is available for eligible families.
Also see: The Fragile X Neural Markers Study, which is also run by the Wilkinson Lab at Boston Children’s Hospital.
Interested in Participating?
Our Most Recent Opportunities
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.
Survey: Fragile X Nutrition Survey
The University of Wisconsin-Madison is conducting a survey to learn about associations between infant feeding and neurodevelopment in children with Fragile X syndrome.
Clinical Trial: Phase 2B/3 Studies of BPN14770 in Fragile X syndrome
Tetra Therapeutics is conducting a two randomized, placebo-controlled studies of BPN14770/zatolmilast to learn about the experimental drug’s safety and efficacy for males ages 12-45.
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.