About the Study
Who can participate?
Parents/caregivers of individuals age 18+ with a Fragile X diagnosis and/or adult individuals with a Fragile X diagnosis may be eligible to participate.
Interested individuals must meet the following requirements to be eligible:
- Have access to a smart phone or computer to complete online surveys
- Be able to read and understand English at a 5th grade level or higher
- Be residents of the U.S.
What will happen in the study?
If the individual with Fragile X syndrome qualifies and decides to participate in this research study, they will be asked to complete a series of online surveys about their thoughts, feelings, interests, and daily life.
If a caregiver/parent qualifies and decides to participate in this study, they will be asked to complete a series of online surveys about their relationship with their child/dependent with Fragile X syndrome.
The surveys should take 1-2 hours to complete. You are encouraged to take breaks throughout and may be completed in more than one sitting. You may be invited to complete one additional brief survey 4 weeks after participating.
What are the good things that can happen from this research?
By sharing your experiences about daily life with Fragile X syndrome, you will be helping us develop a measure of adult functioning, called the AFS, which will pave the way for treatment advances and more informed adult transition policies.
What are the bad things that can happen from this research?
There is a risk that you may feel uncomfortable answering some questions; therefore, you may choose not to answer any questions you do not wish. There is also a risk that you may experience some fatigue while completing the surveys, so we added prompts throughout to encourage you to take breaks.
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 compensation after verifying their identity and completing all surveys.