Burden of HD Survey for Caregiver and the Person with HD

The Huntington's Disease Society of America has partnered with the Euro-HD Network to collect information on the burden of care for Huntington's Disease. The two surveys, provided by the Euro-HD Network, seek to measure the economic, social and psychological impact of Huntington's Disease on both the caregiver and the person with HD. HDSA has adapted each survey so it can be answered on line. All data collected by HDSA will be shared with the Euro-HD Network so it can be incorporated into their study results.

Both surveys are completely anonymous but HDSA is asking for the city and state in which you reside and an email you wish to share. The geographic information will be used for future legislative efforts. The email would be used only to clarify responses on the survey. If you do not wish to give the email you use daily, you can create one just for this survey by going to hotmail, gmail, yahoo, etc.

We invite caregivers to go to We invite people with HD to go to to complete the self-assessment. If you are unable to complete the survey yourself, please ask your caregiver for assistance.

Should you have any questions, please contact Deb Lovecky at If you cannot complete the survey on line and prefer to answer the questions on a printed survey, please contact Seth Meyer at or call 800-345-4372 ext. 240.