Research Opportunity to Give a Voice to People with Huntington's Disease and their Caregivers

Current Situation 

Huntington’s disease can affect one’s quality of life, including different physical, emotional and cognitive symptoms. At present, there are no available measurement tools to assess these important outcomes, which is crucial to advance clinical treatments and new research in this area.


Research Opportunity

Researchers at Northwestern University are conducting a study to create a new self-report questionnaire to better address these issues. An important first step is to speak with people diagnosed with Huntington’s disease and caregivers to learn more about how one’s quality of life is affected.

To accomplish this, they are conducting telephone interviews with interested individuals across the country in March, 2012


What Would I Be Asked to Do?

If you’re interested in participating, you would be asked to call or email the Research Study Coordinator, Ms. Allison Mueller (contact information below), who will tell you more about the study and send you a consent form. After reading, signing and mailing it back to her, a telephone interview will be scheduled. Questions will focus on how your (or your partner’s) quality of life has been affected by Huntington’s disease, with particular emphasis on physical, emotional and cognitive aspects.


Upon completion, you will be sent a $35 gift card as a token of appreciation. Telephone interviews will be audio recorded, however recordings will be destroyed after they have been transcribed with no identifying information.


How You Can Become Involved

To learn more or sign up for this study, please call or email Ms. Allison Mueller, the Research Study Coordinator:

Allison Mueller
Research Study Coordinator

Phone: 312.503.3486