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
The Development in Neurogenetic Disorders Lab at the University of Illinois at Urbana-Champaign is conducting a research study to learn about what skills support early language development.
Parents or caregivers of individuals with Fragile X syndrome who has received services via telehealth during the COVID-19 pandemic may be eligible to participate.
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
Participants of this study will explore what information is considered most important to recently diagnosed fragile X premutation carriers. Open to premutation carriers 18 and over who were diagnosed sometime since January 2018.
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 ...