Fragile X Premutation Carrier Study at University of Kansas

Fragile X Premutation Carrier Study at University of Kansas

Individuals ages 50-80 with the FMR1 gene premutation with or without FXTAS are needed for a research study 

Why are we doing this research? 

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. To learn more about the BRAIN lab, visit their website: http://mosconilab.ku.edu/.

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: 

  • Cognitive tasks
  • Clinical tasks
  • Fine motor task
  • Eye Movement tasks
  • Posture and Gait tasks
  • 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 be in this research study? 

Participants receive $10 per hour of testing completed up to $140. Travel reimbursement is not currently available for participants  

Study Doctor 

Dr. Matthew Mosconi, PhD, Associate Professor at University of Kansas-Lawrence, Director of Kansas Center for Autism Research and Training

To be considered for the study, complete the form here to be connected with the study coordinator.

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By | 2020-01-09T15:48:07+00:00 Jan 9, 2020|Opportunities for families|Comments Off on Fragile X Premutation Carrier Study at University of Kansas