Assessing Parental Satisfaction of Current Fragile X Syndrome Resources Provided at Diagnosis

A research study at the University of South Carolina

Why are we doing this research?

University of South Carolina Genetic Counseling Master’s Program is conducting a research study to learn about parents’ satisfaction with informational resources provided at the time of their child’s Fragile X syndrome diagnosis. This will help make recommendations to healthcare professionals of resources parents want to receive at the time their child is diagnosed.  

Who can participate?

Parents over 18, with a child diagnosed with Fragile X Syndrome in the past 10 years may be eligible to participate. Parents must read and speak English fluently.  

What will happen in the study?

If the individual qualifies and decides to be in this research study, they will complete a less than 5-minute online survey and later participate in a single 60-minute to 90-minute virtual focus group discussion via zoom. The survey may be taken immediately while the focus group discussion might occur up to a couple months later.  

The following is a list of some of the study procedures that will happen during the study: 

  • Complete intake survey to verify you meet the inclusion criteria of the study 
  • Participate in one 60-to-90-minute virtual focus group discussion to provide opinions about resources you received at the time of your child’s diagnosis 

What are the good things that can happen from this research?

Participants will receive a single page summary of the discussion they participated in with mentioned resources highlighted for easy reference. It is possible you learn of new resources from other parents that can help you or your child. Each participant will additionally be able to access the final research study to see the results.  

What are the bad things that can happen from this research?

During the study, participants will reflect on the time their child was diagnosed with Fragile X syndrome. This can bring up difficult emotions for some. Due to the nature of a focus group, participants do not remain anonymous. We will ask all participants be respectful and not share anyone’s identifying information outside of the study.  

Will I/my child be paid to complete this survey?

At the end of each focus group, a $25 Amazon gift card will be raffled.  

How can I participate?

Please complete the form below for access to the intake survey. You must complete the intake survey to be considered for a focus group.

If you have questions please contact Megan Michalski at (843)-345-3071 or Megan.michalski@uscmed.sc.edu

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