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.

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Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey

Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X syndrome (FXS). This information will be valuable for current and future families when considering long-term supports, as well as for healthcare professionals, counselors, and policy makers.  About the Study Who can participate? Parents and caregivers of adults with full mutation ...