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
If you arrived on this page through a MyFXResearch Portal search, you can close this window and return to your filtered results. Or start a new search here.

PIXI Study: Parent-Infant Fragile X Intervention

RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.

Study: Our Fragile X World Registry

Our Fragile X World collects data from families using online surveys and in-person studies. Topics covered include sensory or behavioral challenges, health care experiences, and the impact of Fragile X on families.

Fragile X Premutation Carrier Study at USC

The University of South Carolina is conducting a research study focusing on the range of language, social, and cognitive features that may be associated with variations on the FMR1 gene. Women age 35-75 who are carriers of the Fragile X premutation may be eligible to participate.