The University of South Carolina is conducting a research study to learn about the Fragile X premutation. The focus is on the range of language, social, and cognitive features that may be associated with variation on the FMR1 gene.
About the Research Study
Who can participate?
Women who are carriers of the Fragile X premutation, aged 35–75 years, may be eligible to participate.
What will happen in the study?
If the individual qualifies and decides to be in this research study, participation will take about 4 hours and will take place at the University of South Carolina or in a quiet room in the participant’s home, depending on participant preference. All travel expenses are covered by the project.
Participation will involve:
- Answering questions and completing assessments about cognitive, language, and social styles, and preference and family experiences.
- Providing a genetic sample (cheek swab) to index FMR1 gene variation.
What are the good things that can happen from this research?
We hope our results will help us learn how to better support families who have a child with Fragile X and individuals who carry the Fragile X premutation.
What are the bad things that can happen from this research?
There is minimal risk associated with participation. Participants may experience mild fatigue or frustration while completing study activities; breaks will be offered as needed.
Will I be paid to be in this research study?
Participants receive $50. Travel reimbursement may be available for eligible families.
Our Most Recent Opportunities
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.
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