Youth Survey: Where have you searched for answers about HD?

My name is Colby Chase, and I’m a graduate student in Genetic Counseling at the University of Michigan. I’m working on a research project exploring the experience of young people growing up and living at risk for Huntington disease. Specifically, we are hoping to learn more from young people like you (ages 18 to 25) about questions you have had about HD, where you have looked for information, and what you recommend for others learning about HD. The study meets criteria for exemption from review by the University of Michigan Institutional Review Board (IRB) and your responses will be anonymous.

To participate, you must be aged 18-25 and have a parent or grandparent affected with or at-risk for HD.

The survey consists of 5 sections and should take about 20-30 minutes to complete. To thank you for your participation, you will have the opportunity to be entered into a drawing for one of 10 $25 gift cards.

If you have questions, feel free to contact me at  If for any reason you feel upset by the questions included in the survey, please reach out to HDSA or HDYO for support.

Please click here to begin the survey.

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