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.
Who can participate?
Individuals ages 50–80 with the FMR1 gene premutation with or without FXTAS may be eligible to participate. Individuals with no known diagnosis may also be eligible to participate as a control subject.
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 3–4 visits over the course of a few months subject to participants availability.
The following is a list of some of the tasks that will happen during the study:
- Fine motor
- Eye movement
- Posture and gait
- Functional MRI testing
What are the good things that can happen from this research?
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 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 you/your child be paid to complete this survey?
Participants receive $10 per hour of testing completed, up to $140. Travel reimbursement is not currently available for participants.
Dr. Matthew Mosconi, PhD
Associate Professor at University of Kansas – Lawrence
Director of Kansas Center for Autism Research and Training
Our Most Recent Opportunities
Parents or caregivers of individuals with Fragile X syndrome who has received services via telehealth during the COVID-19 pandemic may be eligible to participate.
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.
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.
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