Opportunities for families

The UC Davis MIND Institute is currently recruiting study research participants. The study’s goal is to better understand the ways in which characteristics of mothers and fathers and relationships within the family influence the language learning environment of young boys with Fragile X syndrome.

This survey will help support families in the Early Check study in NC whose newborns have been diagnosed with Fragile X and inform the design of an early intervention program for these babies.

RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.

We have preliminary evidence that metformin, a common type 2 diabetes medication, is beneficial for language, cognition, and behavior in both children and adults with Fragile X Syndrome.

A survey to measure levels of behavior. When someone with FXS is experiencing anxiety, describe what you see and hear, and how the experience impacts your/their quality of life.

Our research is looking at how you see and remember the visual world, and how attention changes what we see. We hope our findings will provide a better understanding of the differences in vision and attention occurring in autism.

Our goal is to better understand the different mechanisms within the brain that contribute to the development of psychiatric conditions, including depression, so we can establish better prevention and intervention efforts within this population.

This is a voluntary, and completely anonymous, research survey for women and men who have had a child, or at risk of having a child, with a genetic childhood disorder.​​

We are attempting to further assess Metformin’s safety and benefits, which has been shown to improve the symptoms and difficulties that individuals with FXS experience, including delayed language/cognition, excessive eating, obesity, hypogonadism, and delayed puberty.

AZD7325 may be helpful for treatment of Fragile X syndrome. In this clinical trial, we hope to learn more about the medicine’s safety and if it works on symptoms of FXS.

The Waisman Center at the University of Wisconsin-Madison is recruiting boys with fragile X syndrome and autism spectrum disorder for a study on language and communication skills and Magnetic Resonance Imaging (MRI). The purpose of this research is to better understand how children with fragile X and children with ASD use language. All of the testing is done at the Waisman Center, and can be scheduled at your convenience. 

You may be eligible if you have Fragile X syndrome and have had at least one seizure OR if you are a male with Fragile X syndrome who is 17 years or older and have never had a seizure.