(PI Dan Foti, IRB-2023-1870)

Calling all adult females living with the FMR1 premutation!

Researchers at Purdue University are conducting a natural history research study to learn about brain activity and behavior in females living with the FMR1 premutation.  If you or someone you know are a female living with the premutation and are between the ages of 18 and 60 years old, this study could be for you!

About the Study

Who can participate?

Females living with the FMR1 premutation who are 18-60 years old may be eligible to participate.

What will happen in the study?

If you qualify and decide to be in this research study, you will come to Purdue University in West Lafayette, Indiana for 1 visit, which will last approximately 6 hours.  If preferable, the study team can divide up this visit across two days.

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

  • Web-based questionnaires
  • Electroencephalography (EEG) (recording of brain activity)
  • Magnetic Resonance Imaging (MRI)
  • Blood draw
  • Cognitive and neuropsychological testing
  • Complete an interview about your feelings and experiences

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

Being in this research may not help you right now; there is no direct benefit expected because of you being in this study.  Potential benefits include contributing to research that may help us better understand conditions experienced by women living with the FMR1 premutation in the future.

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

Potential risks you may encounter in this study include:

  • Psychological distress from the interview and questionnaires. You may decline to answer any questions and may withdraw from the study, without penalty.
  • You may become fatigued.  You are welcome to take short breaks at any point.
  • During the EEG (brain activity recordings), there is a small possibility of mild skin irritation (redness) where the electrode gel contacts the skin.  This, however, is rare and usually temporary.
  • If you are participating in the MRI (brain scan) portion of the study, you may feel anxious about the tight space within the scanner and the loud noises it makes throughout the session.  You will be able to communicate with us at all times and let us know whether you need attention or to terminate the scan.  This type of brain scan is not safe during pregnancy, and pregnant women are not eligible to participate in this portion.
  • You may experience slight discomfort during the blood draw, similar to what you might experience during a blood draw at a doctor’s office.  You may stop participating in the blood draw at any time.
  • Breach of confidentiality is a risk.  All efforts will be made to maintain confidentiality for all information that is collected.  Summary results of this study will appear in conference presentations, publications, chapters, and reports to federal agencies.  All results will be reported in terms of group trends.  Information identifying individual participants and their responses will not be released without your specific written permission.

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

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

Participants can receive approximately $120 for completing this study visit.

Travel reimbursement is available for eligible families:

  • For participants who live more than 45 minutes away from Purdue University, mileage to/from Purdue will be reimbursed
  • For participants who live more than 90 minutes away from Purdue University, study team can arrange for hotel accommodations
  • Childcare is available by study staff at Purdue upon request

Interested in Participating?

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