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
Study: A Family Genetic Study of Autism and Fragile X Syndrome
The Neurodevelopmental Disabilities Lab at Northwestern University is conducting a research study to learn about how the genes involved in Fragile X syndrome may play a role in language development, cognitive differences, and more.
Study: Aging in Mothers who Carry the FMR1 Premutation
The University of South Carolina is conducting a research study to learn about healthy aging in women who carry the FMR1 premutation.
Study: iBehavior- A Novel Behavior Tracking App Study for individuals with Fragile X syndrome
The T-PAL Lab at the UC Davis MIND Institute is conducting a research study to learn about how we can best measure your child’s behavioral and cognitive functioning in their day-to-day life. Using an iPhone or Android based mobile app at your convenience, you will record your child’s behavior daily for up to 3 weeks. About the Study Who can participate? Parents with a child 5-17 years old with a [...]
Study: Transitioning to Adulthood with Fragile X syndrome
University of Kansas’ LifeSpan Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, as well as the experiences of parents of these young adults.
Study: Autonomic and Sensory Functioning in Infants with FMR1 Conditions
Dr. Jane Roberts and the research staff at the Neurodevelopmental Disorders Laboratory at USC are conducting a research study to learn about the development of infants with Fragile X syndrome and Fragile X premutation over the first few years of life.
Survey: Research Experiences in Fragile X Families
The Brain and Biomarker Lab at the University of Oklahoma is conducting a survey to learn about experiences with research, particularly biomedical research, in families with Fragile X syndrome (FXS).