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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View More Opportunities

Parent Survey: Children’s Behavioral Strengths and Challenges

The MIND Group at the University of Minnesota is conducting a survey for parents of children with Fragile X syndrome to learn about how genetic and neurodevelopmental differences impact behavioral strengths and challenges. Parents of 3–17 year old children living with Fragile X are eligible to participate.

Study: Language Environment Analysis Project (LEAP)

Purdue University is conducting a research study to learn about language and social communication development in Fragile X syndrome. Children ages 3–4 years (36–60 months) with the full mutation may be eligible to participate.

Purdue Early Childhood Study – PANDABox

Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Boys and girls ages 6-18 months with the full mutation may be eligible to participate.

Fragile X Premutation Carrier Study at University of Kansas

The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with premutations of the Fragile X gene, FMR1. Individuals ages 50–80 with the FMR1 gene premutation with or without FXTAS may be eligible to participate.