Researchers at the UC Davis MIND Institute are examining changes in the brain and cognition associated with aging, in males with the Fragile X premutation compared to those without.
Who can participate?
Males over 45 years old who are either:
- Carriers of the Fragile X premutation, or
- Healthy men not carrying the Fragile X premutation
What does the study involve?
- Two 2-day visits to the MIND Institute over 5 years.
- Medical history exam.
- Neuropsychological exam and behavioral testing.
- MRI and blood draw.
- In the year between visits, we will mail you additional measures.
What else can be expected?
- Upon request, families will receive feedback about cognitive strengths and weaknesses.
- You will be compensated for your time and travel.
- You will receive a picture of your brain.
About the MIND Institute
The UC Davis MIND Institute is a collaborative international research center, committee to the awareness, understanding, prevention, and care of neurodevelopmental disorders. All studies take place at:
MIND Institute
2825 50th Street
Sacramento, California, 95817
Visit mindinstitute.ucdavis.edu or more information.
If you’d like to learn more or apply for this opportunity, please fill out the form to send your contact information to the study coordinator or you may contact Jessica Famula directly at (916) 703-0470.
Our Most Recent Opportunities
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 »
Survey: How has the COVID-19 Pandemic Impacted Fragile X Families
Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic.
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.
Parent Survey: Literacy Skills in Children with Fragile X Syndrome
The Research in Neurodevelopmental Disabilities Lab at the Waisman Center at the University of Wisconsin-Madison is looking for parents of male or female children 6 to 17 years old with Fragile X syndrome for an online survey.
