HSG currently has two surveys in which your input is invaluable. We know there are a lot of surveys going around and you have limited time, so we tried hard to make these as brief as possible.
- HD Care Improvement Project: Funded by the Griffin Foundation, the project aims to improve care and access to care but needs your input to do so. If you are someone with HD, or a family member, friend or caregiver of a person living with HD, please take a moment to complete the brief survey below. We would like to understand YOUR experience – YOUR journey – and YOUR knowledge to help us improve access to quality care for HD patients and families in the United States. Your feedback is invited and welcomed! (The survey represents a collaboration among the Griffin Foundation, the Huntington Study Group (HSG) and the Huntington’s Disease Society of America (HDSA) in partnership with a broad group of organizations.) Click here to take the brief survey.
- HD-Health Index: Funded by NJ Cure, this University of Rochester project aims to create a better quality of life outcome measure for research trials. If you have firsthand experience with the disease, either as someone with HD or as a caretaker, and are interested in helping research efforts, we want your opinion. The University of Rochester is administering a half-hour online survey that will ask you to rate the impact various common symptoms of the disease have on your life. $30 compensation for participation. For more information and to view the consent form, click here.
We know you’re bombarded with surveys, but we hope you’ll consider doing both of these.