A Mount Sinai Genetic Counseling graduate student is conducting a research study to learn about possible benefits and side effects of CBD supplements when used to treat FXS symptoms. This information will be obtained by using an anonymous online parental and caregiver survey. 

About the Survey

Who can participate?

Parents and caregivers caring for somebody with FXS who uses, or has used, CBD supplements may be eligible to participate. The parent or caregiver responding to the survey must be at least 18 years old. The individual with FXS can be any age and any gender. 

What will happen in the study?

If the individual qualifies and decides to be in this research study, they will complete an anonymous survey online about the family member or person with FXS who has used CBD supplements. The survey should take about 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?

The community will benefit from the knowledge gained from this research study. 

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

Some questions may make you uncomfortable. You can choose not to answer any question you do not wish to answer. You can also choose to stop taking the survey at any time. 

There is very minimal risk of loss of confidentiality, and there are procedures in place to minimize that. 

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

Will you/your child be paid to complete this survey?

Participation is voluntary, there is no payment for participation. 

If you have questions about the survey, please contact Madison Maertens at madison.maertens@icahn.mssm.edu or her Thesis Advisor, Dr. Reymundo Lozano, at reymundo.lozano@mssm.edu.

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