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
- 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.