Q: Why are we doing this research?
We need caregivers to carefully describe what they see and hear when they feel someone with FXS is anxious and to describe how it impacts their quality of life. Then we can begin to develop scales or instruments that measure these behaviors. Eventually, we can use them to see if treatments or medicines are working for FXS.
Q: Who can participate?
Who can complete the survey:
- Caregivers of individuals with FXS, including those who are mosaic.
- Medical providers and other professionals who treat individuals with FXS.
- Individuals with FXS who are able to self-determine their anxiety and complete the survey.
- All ages and locations are eligible.
- The survey can be completed once for each individual with FXS. So, if you have three children with FXS, you can complete it three times.
Q: What will happen in the study?
The survey will take approximately 15 minutes to complete.
Q: What are the good things that can happen from this research?
We can begin to develop scales or instruments that measure these behaviors. Eventually, we can use them to see if treatments or medicines are working for FXS.
Q: What are the bad things that can happen from this research?
It may be challenging to think about how anxiety affects your child. It might make you sad. Remember that you are helping a lot of people by completing the survey. There may be other risks that we do not know about yet.
Q: Will you/your child be paid to complete this survey?