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Are you or were you at-risk for Huntington’s disease and faced with a decision about undergoing genetic testing? If you are considering or have already undergone predictive testing, we invite you to take a brief anonymous survey to help us understand opinions about anonymous predictive testing. (Please note that you must be 16 or older to take the survey.)
In anonymous testing, you are assigned a pseudonym such as “John Doe” or a numeric-letter code in order to protect your identity. We would like to know the following:
- For those who have not undergone predictive testing: How would the option of anonymous testing influence your decision to test?
- For those who have already undergone predictive testing: Were you offered the option of anonymous testing? If so, how important was that option to you?
This survey includes questions about your age and background, your family history, your decision to undergo testing or not, and your experiences if you have tested. You may complete the survey online using the following link: https://www.surveymonkey.com/s/HDSA2014UCD1.
The survey will take 10-15 minutes to complete.
We thank you for your participation and time.