Opportunities for Families
Visit MyFXResearch Portal to search for opportunities specific to you.
Visit MyFXResearch Portal to search for opportunities specific to you.
Help the NFXF - share your thoughts on gene therapy.
The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with the Fragile X premutation. Males and females ages 50-80 living with the Fragile X premutation, with or without FXTAS, may be eligible to participate. The study includes remote & in-person visits at the University of Kansas.
Researchers at the University of Memphis and Cincinnati Children's Hospital Medical Center are conducting a research study exploring the relationship between barriers and the FXS screening process among family members.
Researchers at the University of Maryland are looking to understand how children with Fragile X syndrome (FXS) and other intellectual disabilities grieve the loss of a loved one. If you are the parent or guardian of a child with FXS or another intellectual disability who has experienced the death of someone in their life when they were 5-17 years old, researchers want to talk to you.
The University of Washington's Neurodevelopmental Language and Learning (NeuDLL) Lab is conducting research addressing how children learn words in stories and the skills that support learning. Participation is remote and can be completed from home. Sessions are scheduled at your convenience.
Are you a Black or Hispanic woman raising a child with Fragile X syndrome? Researchers want to hear about your experiences. The South Carolina Family Experiences Lab is conducting 30-minute interviews to learn about [...]
Dr. Schmitt and the Cincinnati Fragile X Center are conducting a survey to learn about potential barriers and advantages of conducting research visits in the home.
Dr. Craig Erickson at Cincinnati Children’s Hospital Medical Center is conducting a clinical trial to learn about if medication can change the brain’s response to sound, which may be abnormal in FXS.
The Kelleher Lab at Purdue University is conducting a virtual, 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.
Researchers at the University of Arizona are recruiting adult men living with the Fragile X premutation for a study on language, executive function, and quality of life.
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.
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.
The Center of Health and Technology’s (CheT) Outcomes Division is conducting is conducting a survey to learn about [the most prevalent and impactful symptoms of FXS that the individual experiences, as reported by the caregiver.
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.
The University of South Carolina is conducting a research study to learn about healthy aging in women who carry the FMR1 premutation.