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.
About the Study
Who can participate?
Adults (both males and females) aged 18-45 years old with Fragile X Syndrome with stable psychotropic drug dosing for 4 weeks may be eligible to participate.
Psychotropic drugs are drugs that that changes the function of the nervous system and results in alterations of perception, mood, cognition, and behavior. Ask the study team for more details if you are unsure about the medications you are taking.
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 5 visits over 10 weeks.
The following is a list of some of the things that will happen during the study:
- Cognitive testing
- Neuropsychological games
- EEG tasks
- Parent measures
- Optional blood draw
Baclofen, Memantine, Roflumilast and placebo will be tested.
What are the good things that can happen from this research?
We cannot promise any benefits to you or others from your taking part in this research. We hope the information learned from this study will benefit others with FXS in the future. Information gained from this research could lead to better treatments for FXS.
What are the bad things that can happen from this research?
There are minimal risks associated with Baclofen, Roflumilast and Memantine including drowsiness, dizziness, weakness, hypotension, constipation, headache and nausea; however, we will take all necessary precautions to 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 $100 every visit (total of $500).
Travel reimbursement may be available for eligible families.
Interested in Participating?
Our Most Recent Opportunities
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.
Study: A Family Genetic Study of Autism and Fragile X Syndrome
The Neurodevelopmental Disabilities Lab at Northwestern University is conducting a research study to learn about how the genes involved in Fragile X syndrome may play a role in language development, cognitive differences, and more.