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.
Who can participate?
If you have a son or daughter with fragile X syndrome who is (1) entering, currently in, or has just completed their last year of high school or (2) entering, currently in, or has just completed their last year in a transition program within the school district, 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; Dr. Jessica Klusek at the University of South Carolina; and Dr. Julie Taylor at Vanderbilt University Medical Center.
What will happen in the study?
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. Families will have the option of completing all four visits at home through video teleconferencing or completing the first and last annual visits at one of our study sites. 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 through questionnaires. Travel costs will be covered by the study.
Will you/your child be paid to complete this survey?
Travel costs will be covered by the study.
Frequently Asked Questions