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.
Interested in Participating?
Our Most Recent Opportunities
Study: Single Dose Study for Adult Women and Men with FXS
Dr. Craig Erickson at Cincinnati Children’s Hospital Medical Center is conducting a clinical trial to learn about if medication can change the brain’s response to sound, which may be abnormal in FXS.
Project WellCAST: Caregivers of Children with Fragile X Needed for a Research Study
The Kelleher Lab at Purdue University is conducting an NIH-funded clinical trial called Project WellCAST. Project WellCAST aims to understand how to best support caregivers of children with rare neurogenetic conditions, including Fragile X syndrome.
Study: Language, executive function, and quality of life of those with the Fragile X premutation
Researchers at the Waisman Center at UW-Madison are recruiting adults with the Fragile X premutation for a study on language, executive function, and quality of life.
Views and Experiences of Caregiver Coaching in Early Childhood Speech-Language Services: A Survey of Caregivers and Speech-Language Pathologists
The Research in Developmental Disabilities and Language Lab at The University of Wisconsin-Madison is conducting a survey to learn about you and your child’s experiences in speech therapy during early childhood.
Study: Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders (BEOND)
The Cerebra Network for Neurodevelopmental Disorders is conducting a survey to learn more about behaviour, social functioning, sleep, hyperactivity, mood, physical and mental health, as well as family functioning and wellbeing, and how these change over time.
Developing the Fragile X Syndrome-Health Index (FXS-HI): A Caregiver-Reported Outcome Measure
The Center of Health and Technology’s (CheT) Outcomes Division is conducting caregiver interviews to learn about and determine the most important symptoms to individuals with FXS to create an outcome measure for FXS.