Enrolling women ages 60–80 years

Study Title

Aging in Fragile X Carriers

Study Purpose

This study will inform age-related symptoms experienced by women who carry the fragile X premutation. Results will help us understand how to support carriers and their children with fragile X as they age.

Who Can Participate?

• Female carriers of the fragile X premutation
• Ages 60–80 years
• Have a child with fragile X
• Women with FXTAS or other health problems are welcome to enroll

What Does the Study Involve?

You will complete one assessment per year for three years. Each year includes:

• Questionnaires (approximately 1 hour)
• An assessment (two 2–3 hour sessions)

Assessments will measure:

• Cognition
• Language
• Mental health
• Social styles and preferences
• Family experiences
• Motor skills

A genetic sample will be collected to index the FMR1 gene.

Location Options

You can complete the assessments at the University of South Carolina, or our team can travel to your home or another convenient location. All travel expenses are covered.

No travel required.

Compensation

$100 each year

Contact Information

This project is led by Dr. Jessica Klusek, PhD, CCC-SLP.

Phone: (803) 576-7359
Email: scfamilystudy@gmail.com
Website: scfamilystudy.com