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 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
Project WellCAST: Caregivers of Children with Fragile X Needed for a Research Study
The Kelleher Lab at Purdue University is conducting an NIH-funded clinical trial called Project WellCAST. Project WellCAST aims to understand how to best support caregivers of children with rare neurogenetic conditions, including Fragile X syndrome.
Study: Language, executive function, and quality of life of those with the Fragile X premutation
Researchers at the Waisman Center at UW-Madison are recruiting adults with the Fragile X premutation for a study on language, executive function, and quality of life.
Views and Experiences of Caregiver Coaching in Early Childhood Speech-Language Services: A Survey of Caregivers and Speech-Language Pathologists
The Research in Developmental Disabilities and Language Lab at The University of Wisconsin-Madison is conducting a survey to learn about you and your child’s experiences in speech therapy during early childhood.
Study: Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders (BEOND)
The Cerebra Network for Neurodevelopmental Disorders is conducting a survey to learn more about behaviour, social functioning, sleep, hyperactivity, mood, physical and mental health, as well as family functioning and wellbeing, and how these change over time.
Developing the Fragile X Syndrome-Health Index (FXS-HI): A Caregiver-Reported Outcome Measure
The Center of Health and Technology’s (CheT) Outcomes Division is conducting caregiver interviews to learn about and determine the most important symptoms to individuals with FXS to create an outcome measure for FXS.
Study: A Family Genetic Study of Autism and Fragile X Syndrome
The Neurodevelopmental Disabilities Lab at Northwestern University is conducting a research study to learn about how the genes involved in Fragile X syndrome may play a role in language development, cognitive differences, and more.