Who can participate?
Parents or guardians caring for children with Fragile X syndrome who received genetic counseling from a certified genetic counselor in the United States after their child’s diagnosis within the past 5 years may be eligible to participate.
What will happen in the study?
If you qualify and decide to participate in this research study, you will complete a survey online. Responses are anonymous. The survey should take less than 30 minutes to complete. The survey may not be completed in more than one sitting.
What are the good things that can happen from this research?
There are no direct benefits to participation in this study. However, researchers hope to learn information that will help improve the genetic counseling experience for families affected by Fragile X syndrome in the future.
What are the bad things that can happen from this research?
There are minimal risks associated with participating in this survey. You may experience some discomfort when reflecting on your child’s diagnosis and your genetic counseling experience.
There may be other risks that we do not know about yet.
Will I or my child be paid to complete this study?
At the end of the survey, participants can provide their email in a separate survey from the one with their responses. Those who provide an email will be entered into a drawing for one of ten $25 Amazon e-gift cards as a thank you for their participation. Email addresses will solely be used for distributing gift cards and will not be connected to any survey data or used for any other purposes.