If you have a son or daughter with fragile X syndrome in or entering the last year of high school school or their transition program, you and your child are invited to participate in a research study being conducted by Dr. Leonard Abbeduto at the Laboratory on Language Development in Neurodevelopmental Disorders at the MIND Institute, University of California, Davis in collaboration with Dr. Jessica Klusek at the University of South Carolina and Dr. Julie Taylor at Vanderbilt University.
The goal of the study is to learn more about how certain abilities (e.g. memory), certain types of experiences (e.g. interactions with family), and biology affect language abilities in adulthood for both males and females with Fragile X syndrome. We are also interested in understanding how these factors and language/literacy skills affect the abilities of these young adults to function independently. Such information will help us suggest ways to improve teaching and therapy techniques for these individuals.
If you are interested in participating in this study, you and your son or daughter will be asked to participate in four assessment visits over a three-year period. Two visits will be completed at one of our study sites and two will be completed from home. During these visits some assessments will be done directly with your son/daughter, some assessments will be done directly with you, and we will ask you to provide some additional information about your son/daughter. Travel costs will be reimbursed.
If you would like to learn more about this study, fill out the form here and your information will be sent to the study coordinator, who will reach out to you.
Frequently Asked Questions
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 coordinator.
View More Opportunities
This survey will help support families in the Early Check study in NC whose newborns have been diagnosed with Fragile X and inform the design of an early intervention program for these babies.
RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.
A survey to measure levels of behavior. When someone with FXS is experiencing anxiety, describe what you see and hear, and how the experience impacts your/their quality of life.