Burden of HD Survey - The Perspective of Pre-Symptomatic Individuals Living in the USA
Seth Rotberg and BJ Viau are conducting a research survey to better understand the impact Huntington’s Disease has on patients before being clinically diagnosed. This survey is meant for those 18+ year old living in the U.S.A who do not yet have symptoms of HD and either have undergone genetic testing (tested positive) or are still at-risk.
This study will take about 20 minutes. All responses will be kept anonymous. Your personal data will not be shared with others, but a report utilizing the data will be shared with the FDA to better understand clinical trial participation for those at-risk or pre-symptomatic for Huntington’s Disease.
Your participation is voluntary, which means you can choose not to participate. There will be no negative consequences if you decide not to participate. You can withdraw your participation at any time prior to submitting your survey but your previously input answers may be captured in the final data analysis.
If you have any questions or concerns, please email Seth Rotberg at firstname.lastname@example.org or BJ Viau at BJ.Viau@gmail.com.