Fragile X Syndrome research studies | UC Davis MIND Institute

The main purpose of this study is to test an assessment tool called the National Institute of Health Toolbox Cognition Battery. We hope that using this assessment tool will help us find out how well a medication called Quillivant Extended Release is working to improve ADHD and Intellectual Disability conditions.

• 6-24 years old
• Fragile X Syndrome, Down syndrome, Intellectual Disability, Autism, 22q11.2 Deletion Syndrome, ADHD or other neurodevelopmental disability
• Symptoms of ADHD

Fragile X carriers are individuals with the FMR1 premutation, who are at risk of developing a neurodegenerative condition called fragile X-associated tremor/ ataxia syndrome (FXTAS) in later life. FXTAS symptoms include tremor, balance problems, cognitive changes, and a range of other neurological problems.

• Male
• 50 years and older
• Premutation Carriers with NO symptoms of FXTAS (in North America)
• Control (Sacramento Area)

FORWARD-MARCH is the next step following a highly successful research study called FORWARD (Fragile X Online Registry with Accessible Research Database) that was started in 2012. The FORWARD study created the largest database of information on FXS in the United States. Data from the FORWARD study is being used by researchers to learn about the lives of people with FXS. Thanks to families who contribute to FORWARD, researchers are learning about important things like medication use, behaviors, and development over time. These findings are shared with other researchers and clinicians in order to help develop targeted therapies and treatments.

• Individuals with Fragile-X born between 2003 and 2020