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.

Our Most Recent Opportunities
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Survey: Cannabidiol (CBD) Use with Fragile X Syndrome

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Survey: How has the COVID-19 Pandemic Impacted Fragile X Families

Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic. 

Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey

Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X syndrome (FXS). This information will be valuable for current and future families when considering long-term supports, as well as for healthcare professionals, counselors, and policy makers.  About the Study Who can participate? Parents and caregivers of adults with full mutation »