Drs. Craig Erickson, MD, and Lauren Schmitt, PhD, at 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.
Interested in Participating?
Our Most Recent Opportunities
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Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.
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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)”
Study: Connection between Cognition and Genetic Factors in Adults with FXS
Drs. Craig Erickson and Lauren Schmitt at Cincinnati Children’s Hospital 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.
Study: UNC Brain Development Research Study of Infants with Fragile X Syndrome
UNC Chapel Hill is conducting a research study to learn about the early brain and behavioral development of infants with FXS to aid in the future development of better supports and treatments.
Conference Research Opportunity: Cincinnati Research & Treatment Center Biorepository
Researchers at Cincinnati Children’s Hospital Medical Center want to partner with you or your child to learn more about Fragile X. The Cincinnati Research & Treatment Center team will be conducting research in San Diego at the Town and Country Resort from July 12-14th, 2022 for International Fragile X Meeting attendees. All ages are welcome to participate.
BRIDGE Study: Brain Indicators of Development Growth
A longitudinal research study from The Wilkinson Lab at the Boston Children’s Hospital Labs of Cognitive Neuroscience to learn about how differences in brain activity affect learning, language, and behavior in Fragile X Syndrome.