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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PIXI Study: Parent-Infant Fragile X Intervention

RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.

Study: Our Fragile X World Registry

Our Fragile X World collects data from families using online surveys and in-person studies. Topics covered include sensory or behavioral challenges, health care experiences, and the impact of Fragile X on families.

Fragile X Premutation Carrier Study at USC

The University of South Carolina is conducting a research study focusing on the range of language, social, and cognitive features that may be associated with variations on the FMR1 gene. Women age 35-75 who are carriers of the Fragile X premutation may be eligible to participate.