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.

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Study: Aging in Toolbox

Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.