Are you between the ages of 50-80 living with the Fragile X premutation? Help researchers at the University of Kansas BRAIN Lab learn about behavioral and brain differences associated with the Fragile X premutation.
Males & females 50-80 years old living with the Fragile X premutation, with or without FXTAS, may be eligible to participate.
About the Study
Who can participate?
Males and females ages 50-80 living with the Fragile X premutation, with or without FXTAS, may be eligible to participate.
What will happen in the study?
If the individual qualifies and decides to be in this research study, they will come to the University of Kansas – Lawrence and the University of Kansas Medical Center for 2 visits over the next 2-3 years.
The following is a list of some of the study procedures that will happen during the study:
- Cognitive testing
- Clinical/neurological evaluation
- Motor Testing
- MRI
- Blood Draw
What are the good things that can happen from this research?
Being in this research may not help you right now. The goal of this study is to gain a better understanding of the cognitive and motor issues associated with FXTAS and identify markers associated with FXTAS onset.
What are the bad things that can happen from this research?
The potential risks related to testing in this study are minimal, and they are no greater than those experienced through regular clinical evaluations.
There may be other risks that we do not know about yet.
Will I or my child be paid to complete this study?
Participants receive $90 per visit.
Travel assistance and/or reimbursement may be available for eligible families.
Interested in Participating?
Our Most Recent Opportunities
Study: Mechanisms and biomarkers of disease progression in Fragile X-associated tremor/ataxia syndrome (FXTAS)
The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with the Fragile X premutation. Males and females ages 50-80 living with the Fragile X premutation, with or without FXTAS, may be eligible to participate. The study includes remote & in-person visits at the University of Kansas.
Exploring Potential Barriers to the Fragile X Syndrome Cascade Screening Process
Researchers at the University of Memphis and Cincinnati Children's Hospital Medical Center are conducting a research study exploring the relationship between barriers and the FXS screening process among family members.
Grief and Bereavement Experiences of Children with Intellectual Disabilities
Researchers at the University of Maryland are looking to understand how children with Fragile X syndrome (FXS) and other intellectual disabilities grieve the loss of a loved one. If you are the parent or guardian of a child with FXS or another intellectual disability who has experienced the death of someone in their life when they were 5-17 years old, researchers want to talk to you.
Language Learning in Children: Vocabulary Acquisition in a Meaningful Context
The University of Washington's Neurodevelopmental Language and Learning (NeuDLL) Lab is conducting research addressing how children learn words in stories and the skills that support learning. Participation is remote and can be completed from home. Sessions are scheduled at your convenience.
Study: Recording the Experiences of Black and Hispanic Mothers who have Children with Fragile X Syndrome
Are you a Black or Hispanic woman raising a child with Fragile X syndrome? Researchers want to hear about your experiences. The South Carolina Family Experiences Lab is conducting 30-minute interviews to learn about the experiences of Black and Hispanic women raising a child with Fragile X syndrome. About the Study Who can participate? Black and Hispanic women of any age, who have a child with Fragile X syndrome, may [...]
Survey: What do you think about at-home research visits?
Dr. Schmitt and the Cincinnati Fragile X Center are conducting a survey to learn about potential barriers and advantages of conducting research visits in the home.