If you have a son or daughter with Fragile X syndrome between 6 and 18 years of age, you and your child are invited to participate in a research study being conducted by Dr. Jamie Edgin at the Memory Development and Disorders Lab at the University of Arizona, and two other sites across the United States: UC Davis in Davis, CA and Drexel University in Philadelphia, PA.
The goal of this study is to validate a comprehensive, computerized memory assessment for use in populations with intellectual disabilities. It is our hope that the memory assessment you are helping to develop will aid in diagnosing memory problems in these and other populations.
If you decide that you and your son or daughter would like to be in this study, we will ask you to visit one of the study sites two to four times over a maximum of 6 months. At each visit, we will:
- Collect a sample of your son or daughter’s cognitive and verbal abilities through a series of memory and speech measures.
- Administer a tabletop non-verbal IQ measure and eyesight acuity assessment.
- Ask you to fill out some questionnaires and participate in an interview about your child’s behavior and everyday living skills.
If you would like to learn more about this study, please call the Study Coordinator at the University of Arizona, MDD@email.arizona.edu, 520-626-0244.
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.