Category: Opportunities for families

St. John’s Study: Positive Family Intervention for Families of Children with Fragile X Syndrome: Using Telehealth to Reduce Problem Behavior and Improve Maternal Mental Health

by Tara Jabbari

Family running

Free Treatment Study! Are you a mother of a child with Fragile X Syndrome? Would you like free parent training? At St. John’s University, we are conducting a research study on the effectiveness of a parent training program for parents of children with fragile X syndrome. We are currently seeking mothers to volunteer to participate


MGH/Harvard Study: Assessment of Glutamatergic Neurosystem in Fragile X Syndrome for Targeted Therapy

Nick and attendee

MGH/Harvard is recruiting adult males with Fragile X Syndrome, 18 years or older, for a neuroimaging study. Participants will be compensated up to $350.   The aim of the study is to examine problems with a chemical messenger called glutamate in the brain in Fragile X Syndrome, and how it impacts sensory, motor and cognitive


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

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 FXS. Our goal is to find brain markers that predict cognitive, language, and behavioral difficulties in young boys with FXS,


Study: Residential and Respite Care Services Survey

A study by Vanderbilt Kennedy Center A study for family members with intellectual members of adults with intellectual & developmental disabilities. Anonymously share your experience with residential care services and respite care services. 10 randomly selected participants will receive a $25 gift card to the store of their choice. Please note, the survey will take


Stanford: Telehealth Study for Disruptive Behavior

Who Can Participate? Boys with a diagnosis of fragile X syndrome Aged 3 to 10 years, inclusive Shows disruptive behaviors (e.g., aggression, self-injury, property destruction) What Participation Involves: Completing questionnaires about your child’s behavior every 4 weeks for 16 weeks Randomization to observation or in-home treatment What are the Benefits of Participating? Potential improvement in

Brief Social Skills Training for Boys with Developmental Disabilities

Who Can Participate? Boys between 8-18 years old diagnosed with an intellectual or developmental disability, ASD, or Fragile X Syndrome What Participation Involves: Visits to Stanford for 3–4 days Cognitive testing Behavioral skills training to improve social skills Two optional 30-minute MRI scans What are the Benefits of Participating? Potential improvement in your child’s social

Study on memory in children, adolescents, and young adults with Fragile X

If you have a son or daughter with Fragile X syndrome between 6 and 18 years of age, you and your child are invited to participate in a research study being conducted by Dr. Jamie Edgin at the Memory Development and Disorders Lab at the University of Arizona, and two other sites across the United


Assessment of Glutamatergic System in Fragile X syndrome

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of Massachusetts General Hospital. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as to

CANDI & UMASS: Pilot Study for Children with Fragile X Syndrome

The Child and Adolescent NeuroDevelopment Initiative (CANDI) at the University of Massachusetts Medical School is conducting a pilot research study on Fragile X syndrome, sponsored by Fulcrum Therapeutics. The goal of this study is to test new ways of measuring results in Fragile X clinical trials. Eligible participants will have 3 study visits — 2


Study: Brain Development in Relation to Girls with Fragile X Syndrome

Brains, Behavior, and Girls! Researchers at Stanford University are studying brain development in relation to behavior, cognition, and mood in girls with fragile X syndrome. This study is an NIH-funded research project aimed to increase our understanding of the brain during a critical time of a child’s growth. Information learned from this research can ultimately


Studies of Brain/Body Interaction at Rutgers University

What is the study for? The goal of this study is to provide a comprehensive profile of the nervous systems in order to understand interactions between the brain and body, while an individual walks naturally and while breathing at a slow controlled pace. We aim to study these interactions among a variety of populations, from


Study: Come Interact and Play Music with our Avatar!

(Above) Example of participant interacting in real-time with our avatar. What is the study for? This study investigates the interactions between an avatar and a person in our custom body suit. We investigate, in a playful setting, how to improve the person’s body awareness to improve motor control.Who can participate? Participation is open to all,

Study: Cognition, Balance, and Walking Patterns in Fragile X Premutation Carriers

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of Rush University Medical Center. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as
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