Drs. Craig Erickson and Lauren Schmitt, of Cincinnati Children’s Hospital Medical Center, are conducting a series of research studies to learn about the brain and cognition and how they are connected with genetic factors related to FXS.  

Interested? Learn more below.

About the Study

Who can participate?

Adults (both males and females) aged 18-45 with Fragile X Syndrome 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 visit Cincinnati Children’s Hospital Medical Center for at least one visit that is 1-3 days long.  

The following is a list of some of the things the participant might be asked to do. There are lots of breaks built into the schedule.  The study team has many supports in place to help participants with each of the following tasks: 

  • Parent questionnaires 
  • Participant cognitive testing 
  • Eye-tracking 
  • Electroencephalogram (EEG)   
  • Blood draw 

Please note that the majority of these tasks are optional and not required.

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

Being in this study may not help you right now.  When we finish the study, we hope that we will know more about FXS. This may help others with FXS later on.   

Cognitive testing reports are available upon request.  

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

There are minimal risks involved in the study. However, we will take all necessary precautions to minimize this risk. 

Blood collection may cause bruising at the site where the needle goes into the skin. Fainting, and in rare cases, infection, may occur. Pain and emotional distress may also occur at the time of the blood sample.  

The completion of the other tasks may cause mild nervousness or fatigue (tiredness). EEG is a non-invasive way to measure brain activity that can be associated with sensory discomfort. Our staff is highly trained and will help minimize these risks. 

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 $80 to $300 per visit, depending on the items completed.  

Travel reimbursement may be available for eligible families.   

What study tasks are required?

There is no “easy” answer. All participants will need to complete parent questionnaires and certain participant cognitive tests. EEG and eye tracking are not required but are our main interest, so we usually try to attempt with all participants.  

It’s okay to be nervous about the EEG net! It is a little weird and different. Our team of psychologists and EEG experts are here to help families and individuals with FXS become comfortable and confident with EEG!

Depending on family comfort level, we can suggest exercises that will help individuals “practice” wearing an EEG net and can even mail a cap to practice with at home. The study team can help families practice before the study visit. Most of our participants who have never worn an EEG net before are successful during their first visit after using these strategies at home. 

The study team is interested in learning more about the Fragile X protein (FMRP) and how it relates to characteristics of Fragile X. Drawing your blood will help the study team learn more.  

The study team can tell you more about this work if you are interested. 

Although we would love to receive bloodwork from all of our participants (as well as their family members), blood draws are not required for participation in this study.  

There are some exclusionary medications, or medications that you cannot take while participating in the study. We suggest reaching out to the study team to learn more.

Do not make any changes to your/your child’s medication regimen without consulting with your doctor. 

Individuals with FXS and families that travel to support them may be eligible for travel reimbursement. Many travel expenses can be booked directly by our study team. Other eligible expenses may be purchased directly by families and reimbursed by the hospital. Please reach out to our study team so they can prepare a travel plan that works for your unique family.  

We have many projects currently ongoing for individuals with FXS as well as their family members. When you complete the contact form below, a study team member will reach out to talk to you about this and any other research opportunities you may be eligible for.  

Interested in Participating?

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