About the Study
Who can participate?
Caregivers of individuals with full mutation Fragile X syndrome (FXS). The individuals with Fragile X may be any age and male or female. You must read English fluently.
What will happen in the study?
If you decide to be in this research study, you will complete an anonymous online survey. The survey should take about 20 minutes to finish.
You can choose not to answer any questions you choose. You can also choose to stop taking the survey at any time. The survey must be completed in one sitting.
All survey data will be kept on a secure, password protected server on the campus of the University of Wisconsin-Madison. Only individuals directly involved in the research study will have access to the data.
What are the good things that can happen from this research?
There are no direct benefits to you or your child.
You will be contributing to the body of knowledge about early development in Fragile X. Data from this study could help provide critical information regarding the relationship between certain types of infant feeding and the development of more severe phenotypes in Fragile X.
The results will be published and could inform public policy on newborn screening for Fragile X if an early-life nutritional intervention were available.
What are the bad things that can happen from this research?
There are minimal risks in participating in this survey. Your time in answering the survey questions could be a burden.
There may be other risks that we do not know about yet.
Will I or my child be paid to complete this study?
No, there is no compensation for completing this survey.