USC

The goal of the study is to understand how language, cognitive, and other factors influence success of youth with fragile X as they transition from high school into adult contexts. The hope is that the results can inform services to better support individuals and their families during the transition into adulthood.

This study is funded by the National Institute on Child Health and Human Development (PI: Abbeduto), and is a multi-site study involving the University of California Davis and Vanderbilt University.

Who can participate?

• – High school juniors and seniors with fragile X syndrome
• – Students with fragile X syndrome who are completing the final years of a school-based adult transitions program

What does the study involve?

This is a longitudinal study, involving one assessment per year for four years. In the first and fourth year of the study, youth with fragile X and their caregiver will travel to the University of South Carolina to complete language and developmental assessments. In the second and third year of the study, caregivers will complete phone interviews and questionnaires from home. All travel costs are covered by the project.

Is travel required?

Youth who are unable to travel have the option to complete the study virtually via our secure telehealth platform. If you choose to participate in-person at the University of South Carolina, we will cover all travel costs.

What is the compensation?

You will receive $55 for completing study activities in years one and four, and $35 for completing the telephone interviews and questionnaires in years two and three.

Can you share the results?

If requested, we can share a brief report summarizing performance on standardized assessments.

How can I get more information?

Interested in learning more? Reach out to us at SCFamilyStudy@gmail.com or (803) 576-7359.