Student researcher Molly Mizenko at Indiana University’s Genetic Counseling Graduate Program is conducting a survey to learn about the experiences that parents and guardians have had with the genetic counseling they received for their child’s diagnosis of Fragile X syndrome (FXS).
About the Study
Who can participate?
Parents and guardians of children living with FXS who received genetic counseling from a certified genetic counselor in the U.S. 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 about 15 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 survey study. However, researchers hope to learn information that will help improve the genetic counseling experience for families affected by FXS 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 will have the option to provide their email in a survey separate 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 the gift cards and will not be connected to any survey data or be used for any other purposes.
Interested in Participating?
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For additional questions about this survey, you can email Molly Mizenko at mmizenko@iu.edu.
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