HDSA HD Symptoms and Treatment Impact Survey

Background and Purpose
The Huntington's Disease Society of America (HDSA) is committed to improving the lives of everyone affected by Huntington’s disease and their families as we work towards our vision of a world free of HD. One key strategy is to raise awareness of the urgent need to speed the development of new treatments to regulatory decision makers and medical product developers, while informing them of the community’s preferences and needs around the:

burden of living with HD,
preferred treatment outcomes and wellness priorities,
challenges of participating in clinical trials, and
benefit expectations and risk tolerance for new therapies.

To support this goal, we worked with individuals living with HD and family members to develop the HDSA HD Symptoms and Treatment Impact Survey. The survey will be the foundation for an HDSA Externally-led Patient Focused Drug Development Meeting for Pre-symptomatic and Early to Mid-Stage Adult Onset HD. Both the survey results and the meeting comments can inform the FDA’s decisions and oversight during the development of new therapies and during the agency’s review and approval of new therapies.