Researchers specializing in movement disorders at Rush University Medical Center are conducting a research study and are looking for participants!

The goal of this study is to learn about brain activation in people living with FXTAS during tasks like walking and thinking.  If you or someone you know are 50+ years old and are living with FXTAS, keep reading to learn more and see if this study is a good fit for you!

About the Study

Who can participate?

Men and women over 50 years old who have been diagnosed with 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 be asked to come to Rush University Medical Center in Chicago, IL for a one-time visit that takes about 4 hours to complete.

The following is a list of some of the study procedures that will happen during the study:

  • Gait testing to measure your walking patterns.  This will include wearing a non-invasive brain imaging cap and small sensors (like Apple watches or Fitbits) on the outside of your clothing.
  • Cognitive (thinking) testing while wearing a non-invasive brain imaging cap
  • Cheek swab to gene test for FXTAS if your FMR1 gene size is not already known
  • Brain imaging scan (MRI)
  • Clinical evaluation
  • Questionnaires

What are the good things that can happen from this research?

You may not directly benefit from participating in this research study, but you will help us learn more about brain activation patterns in people living with FXTAS, which may contribute to the development of more targeted therapies in the future.

What are the bad things that can happen from this research?

The potential risks related to the procedures of this study are minimal.

You may risk losing your balance or falling during walking tests.  All participants are asked to wear comfortable walking shoes and will be monitored closely during testing to limit fall risk.

You also may experience physical or mental fatigue during walking or cognitive (thinking) tests.  Rest and hydration breaks will be given as often as needed to avoid this.

If you have anxiety and/or claustrophobia, a partner neurologist at Rush University Medical Center may prescribe an anxiety-reducing medication to be taken prior to the MRI scan.

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 a $100 Visa gift card for completing the study visit.

Travel reimbursement is not available for participants.

Interested in Participating?

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