Rush University is conducting a research study to validate a rating scale created to assess the motor symptoms of people with FXTAS – the “Fragile X-Associated Tremor Ataxia Syndrome Rating Scale (FXTAS-RS)”.

There will also be an opportunity to participate in-person before the 18th International Fragile X Conference in San Diego.

About the Study

Who can participate?

Men and women over 50 years old, diagnosed with FXTAS, or Premutation Carrier 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 be asked to complete three study visits at Rush University Medical Center – 1725 W Harrison St, Suite 755, Chicago, IL:  

  • 1st Visit – Baseline 
  • 2nd Visit – One month later 
  • 3rd Visit – 12 months from the 1st Visit 

During the visits, you will be guided by a neurologist to perform some movements that will be part of your motor exam that will be also videotaped. This procedure would take about 20 to 30 minutes of your time. 

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

You will be contributing to the development of a scale for Fragile X-associated Tremor Ataxia Syndrome to be used in future clinical trials. 

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

There are minimal risks to the procedures we are using. It is possible that you may experience fatigue or stress related to some tasks you will be asked to perform during your motor exam. 

There may be other risks that we do not know about yet. 

Will I or my child be paid to complete this study?

No payment will be provided. 

Interested in Participating?

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