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.
Our Most Recent Opportunities
Study: Focus Group on Difficulty with Changes and Rigid/Inflexible Behaviors in Fragile X Syndrome
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
Study: Adult Fragile X Premutation Carriers Needed for Registry
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
Survey: Cannabidiol (CBD) Use with Fragile X Syndrome
A Mount Sinai Genetic Counseling graduate student is conducting a research study to learn about possible benefits and side effects of CBD supplements when used to treat FXS symptoms. This information will be obtained by using an anonymous online parental and caregiver survey. About the Survey Who can participate? Parents and caregivers caring for somebody with FXS who uses, or has used, CBD supplements may be eligible to participate. The parent or caregiver responding to the survey must be at least 18 years old. The individual with ...
Exploring the Most Important Information for New Premutation Carriers
Participants of this study will explore what information is considered most important to recently diagnosed fragile X premutation carriers. Open to premutation carriers 18 and over who were diagnosed sometime since January 2018.
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 ...
Clinical Research Study: Brain Development in Relation to Behavior and Cognition
Males between the ages of 18 and 30 years with a diagnosis of Fragile X syndrome (full mutation) may be eligible to participate.
