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We would like to inform you about a new research study at Vanderbilt focused on the transition to adulthood for young adults with fragile X syndrome. The study is being conducted by Dr. Julie Lounds Taylor at the Vanderbilt Kennedy Center and two other sites across the United States.
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 have a son or daughter with fragile X syndrome in or entering the last year of high school, you and your child are invited to participate in the study. You and your son or daughter will be asked to participate in 4 assessment visits over a 3-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, and families will receive a $200 honorarium for completing all parts of the study.
If you would like to learn more about this study, please call the Study Coordinator at 615-322-2943 or email: [email protected]