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Huntington's Disease Youth Organization

Survey on how young adults affected by or at risk for Huntington’s disease are thinking about future options

HDYO has more information about HD available for young people, parents and professionals on our site:

February 29, 2016


This is a notification on a survey young people impacted by HD globally can participate in. It’s focused on young people’s knowledge of the options around having children. For more details click the link to read the whole article.


You are invited to take a short survey assessing how young adults affected by or at risk for Huntington’s disease are thinking about future options. We are recruiting individuals who are 18-34 years old, gene positive or at risk for Huntington’s disease, and speak English. The survey should take no longer than 10-15 minutes to complete.

Upon completion, you can enter to win a $25 Amazon gift card by providing your email address. You will also receive an education sheet at the end of the survey.

Your participation is voluntary. The survey includes 21 multiple-choice questions, some with the option to explain your answer, and one free response question. Your answers are anonymous and greatly appreciated. You can discontinue the survey at any time. There are no physical risks associated with taking this survey. However, thinking about HD can sometimes be emotionally challenging. If you feel that you’d benefit from additional support you may reach out to Lauren Lichten, a certified genetic counselor (617-638-5958), for assistance.

If you are interested in participating, please use the survey link here

Please contact the study coordinator Lauren Hogan at if you have any questions or would like to learn more about the study. By reading this email and voluntarily taking the survey, you have provided implied consent. If you have any questions about your rights as a research participant, please contact the Institutional Review Board at Boston University, 617-358-6115.

Thank you very much for your support and participation!

Warmest regards,

Lauren M Hogan

Genetic Counseling student

Boston University School of Medicine

Lauren Hogan


Last updated: February 29, 2016 10:00