The Modifiers of Fragile X-Associated Disorders (FX-MOD) study is trying to answer the question of why some people with Fragile X syndrome have seizures and others do not, and you can help!
You may be eligible if:
- you are a male or female with Fragile X syndrome and have had at least one seizure, OR
- you are a male with Fragile X syndrome who is 17 years or older and have never had a seizure.
Study activities include a medical history review, a blood or saliva sample for whole genome sequencing, and health and well-being questionnaires.
Participants will receive a $25 gift card for a completed blood or saliva sample.
Travel is not required. Participation can take place through the mail.
The study is being conducted by the National Fragile X Center at Emory University.
To be considered for the study, complete the form here to be connected with the study coordinator.
If you’d like to learn more or apply for this opportunity, please fill out the form to send your contact information to the study coordinators.
View More Opportunities
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.
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.