Category: Opportunities for families

Research: Did you grow up in Iowa, or know someone who did?

Are you, or someone you know, a carrier of the FMR1 premutation? If so, you may be eligible for our study of language and social characteristics in fragile X syndrome and the FMR1 premutation! Our research team at Northwestern University is studying language and social characteristics related to the FMR1 gene involved in fragile X

Survey: Parent decision-making to inform Fragile X syndrome clinical drug trials

New survey study to investigate the decision-making process among parents considering enrolling their child with FXS in a clinical drug trial. Fill out a questionnaire which will ask you about factors related to deciding to enroll your child in a clinical drug trial, your views on clinical trials more generally, and potential barriers to participating

Study: FX-LEARN – Language Learning in Children with FXS

AFQ056 for Language Learning in Children with Fragile X Syndrome (NN107) NN107 FX-LEARN is currently looking to enroll children with Fragile X Syndrome (FXS) for a research study conducted by the Network for Excellence in Neuroscience Clinical Trials (NeuroNEXT). Dr. Elizabeth Berry-Kravis at Rush University is the Protocol Principal Investigator and is leading this national

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 David Salomon

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

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: Girl Behavior and NeuroDevelopment (Girl BAND)

Researchers at Stanford University are studying brain development in relation to behavior, cognition, and mood in girls with fragile X syndrome. The project is designed to improve our understanding of brain and behavioral growth in girls during a critical time in their development. Information gained from this research will improve our understanding of learning, behavioral