From Anticipation to Reality: An Analysis of the Impact of Genetic Testing Results for Movement Disorders on Individual’s Lifestyle Choices
The purpose of this study is to understand how receiving genetic test results affects lifestyle choices and decisions among individuals with the following movement disorders (Huntington’s disease, Parkinson’s disease, Dystonia, and Ataxias).
Link to enroll: https://som.qualtrics.emory.edu/jfe/form/SV_0e7pAitcrL6jQJU
Disclaimer: This research opportunity is not affiliated with NAF. We are sharing this information as a resource for the Ataxia community. Sharing this information does not imply endorsement by NAF. The purpose of this study is to understand how receiving genetic test results affects lifestyle choices and decisions among individuals with the following movement disorders (Huntington’s disease, Parkinson’s disease, Dystonia, and Ataxias).
About the Study
Eligible Ataxia Types
Genetic Ataxia
Type of Study
Remote
Clinical Trial Phase
N/A
Age Range
18+
Study Start Date
05/26/2026
Estimated Completion Date
11/15/2026
IRB Approval #
#2026P000393
Location(s)
Remote
Contact Information
Anna Prestel
anna.prestel@emory.edu
404-804-2185
What does participation in the study entail?
Completing a one-time, anonymous online survey that takes approximately 10 minutes. The survey will ask about your genetic testing experience and how your results influenced your lifestyle decisions. You will not be asked for your name or contact information, and your responses will remain anonymous.
What are the potential benefits/risks for participants?
Some questions may feel personal or emotional. You may skip any question you do not wish to answer. While you may not benefit directly from participating, your responses may help improve genetic counseling and support for individuals and families in the future.
Is there financial compensation?
No
Is there travel reimbursement?
No
Who is eligible?
Individual’s are eligible if they are 18 years of age or older, reside in the United States, have previously undergone genetic testing for Huntington’s disease, Parkinson’s disease, dystonia, or ataxia (You can participate with a negative or positive result, and you will not need to submit your genetic test report).
Additional Information or Resources
View study flyer
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