DOWNLOAD THE PDF Dr. Joan A. O’Keefe’s lab at Rush University are researching the effect of treadmill training with or without a combined thinking task in people with FXTAS.

Participation

Who can participate?

The study is looking for FXTAS patients of any age. You may be able to participate in this study if you are able to stand unassisted and walk for at least 2 minutes.

You will NOT be able to participate in the trial if you have:

  • A history of traumatic brain injury, stroke, or multiple sclerosis with changes on CT/MRI.
  • Significant cardiopulmonary or cardiovascular disease, dementia, or unstable psychiatric disorders including major depression or schizophrenia.

What will happen in the study?

You will be asked to:

  • Walk on a treadmill at your comfortable speed for 20 to 45 minutes or walk on a treadmill while doing a mental exercise for the same duration, 3 times per week for 6 weeks. You will be supported by a safety harness while on the treadmill and carefully monitored throughout.
  • Wear sensors around your wrists, ankles, chest, and waist during the balance and walking tests; these are worn outside of your regular clothing.
  • Have a short neurological examination and neuropsychological tests.
  • Answer questionnaires about your balance confidence and any symptoms of anxiety, sleep, and depression.
  • Have blood drawn for measuring the levels of a growth factor in your blood.
  • Have an MRI.
  • Go through the assessment tests (#2 through #6 above) before the trial and then immediately after, 1-month, and 6-months following the trial.

The time it takes to complete the above tests is 1.5 to 2 hours.

Will you/your child be paid to complete this survey?

Participants will NOT be monetarily compensated for participation in this study.

Study Locations

The testing will be performed in two locations in Chicago:

Rush University Armour Academic Center
600 South Paulina

Rush University Hospital
Kellogg Building Room 235K
1625 West Harrison

For more information
Our Most Recent Opportunities
If you arrived on this page through a MyFXResearch Portal search, you can close this window and return to your filtered results. Or start a new search here.

Survey: Cannabidiol (CBD) Use with Fragile X Syndrome

A Mount Sinai Genetic Counseling graduate student is conducting a research study to learn about possible benefits and side effects of CBD supplements when used to treat FXS symptoms. This information will be obtained by using an anonymous online parental and caregiver survey.  About the Survey Who can participate? Parents and caregivers caring for somebody with FXS who uses, or has used, CBD supplements may be eligible to participate. The parent or caregiver responding to the survey must be at least 18 years old. The individual with ...

Survey: How has the COVID-19 Pandemic Impacted Fragile X Families

Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic. 

Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey

Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X syndrome (FXS). This information will be valuable for current and future families when considering long-term supports, as well as for healthcare professionals, counselors, and policy makers.  About the Study Who can participate? Parents and caregivers of adults with full mutation ...