Have you ever heard of “pharmacogenomics” or “pharmacogenomic testing”? 

Researchers at the University of Alabama are exploring the knowledge and opinions held by the FX community about pharmacogenomic testing.

Pharmacogenomic testing helps doctors predict how a person will respond to medications based on their genetics.  Recent research indicates that individuals living with FXS may benefit from personalized medical management, like pharmacogenomic testing, due to the wide spectrum of symptoms associated with FXS.

About the Study

Who can participate?

Anyone 18 years or older who identifies either as an individual living with FXS, a caregiver of someone living with FXS, or an individual living with the FXS premutation may participate in this study.

What will happen in the study?

If you agree to join this study, you will be asked to complete an online survey.  This survey has about 20 questions and will take 15-20 minutes to complete.  You do not need to complete the survey in one sitting.  The survey will contain questions about you or your child’s experiences and knowledge of pharmacogenomic testing, thoughts about pharmacogenomics, and demographic information.

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

Researchers hope to learn more about the thoughts and feelings of the FX community so they can better understand and serve the community.

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

Some of the survey questions may bring up uncomfortable topics related to decision-making or opinions.  Additionally, questions may address past situations that are difficult to recall.

There may be other risks that we do not know about yet.

Will I or my child be paid to complete this study?

There is no compensation for completing this study.

Interested in Participating?

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