Have you or your child participated in Fragile X research? You can help!

The Brain and Biomarker Lab at the University of Oklahoma is conducting a survey to learn about experiences with research, particularly biomedical* research, in families with Fragile X syndrome (FXS).

*Biomedical could mean anything related to clinical trials, or studies where some kind of physical data was recorded like EEG, blood draws, eye movements, or neuroimaging data for example. However even if you haven’t participated in this type of study before we still want to hear from you!

About the Study

Who can participate?

Caregivers/family members for individuals with FXS and individuals with full mutation FXS may be eligible to participate.

This survey is primarily for caregivers or family members of individuals with FXS, with optional questions for self-advocates with FXS as young at four years old. The caregiver/family member completing the majority of the survey must be 18+ years old.

What will happen in the study?

If the individual qualifies and decides to be in this research study, they will complete a survey online. The survey should take about 10-15 minutes for the caregiver to answer questions about themselves and 1 family member with FXS.

If you choose to answer questions about additional family members with FXS, please allow about 10 minutes per additional family member.

Additionally, individuals with FXS can opt to answer survey questions about their own experiences with research if they would like to participate. FXS self-advocate participation is not required. Surveys for individuals with FXS should take about 10 minutes and may be taken by the individual themselves or questions may be read to the individual by a caregiver. The FXS survey portion may be completed at a separate time from the caregiver survey portion.

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

There are no direct benefits to participating in this survey, however we hope that your answers will help us improve accessibility of biomedical research to FXS families.

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

The only risk associated with the study is accidental release of data. We store your data in secure databases to reduce this risk.

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

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

Participants may be compensated for participating.

Interested in Participating?

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