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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View More Opportunities

Parent Survey: Children’s Behavioral Strengths and Challenges

The MIND Group at the University of Minnesota is conducting a survey for parents of children with Fragile X syndrome to learn about how genetic and neurodevelopmental differences impact behavioral strengths and challenges. Parents of 3–17 year old children living with Fragile X are eligible to participate.

Study: Language Environment Analysis Project (LEAP)

Purdue University is conducting a research study to learn about language and social communication development in Fragile X syndrome. Children ages 3–4 years (36–60 months) with the full mutation may be eligible to participate.

Purdue Early Childhood Study – PANDABox

Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Boys and girls ages 6-18 months with the full mutation may be eligible to participate.

Fragile X Premutation Carrier Study at University of Kansas

The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with premutations of the Fragile X gene, FMR1. Individuals ages 50–80 with the FMR1 gene premutation with or without FXTAS may be eligible to participate.