Help Us Learn More

 

Researchers, clinicians and other HD healthcare professionals frequently use anonymous surveys to solicit input from HD patients, families and caregivers about topics such as genetic testing, symptoms and clinical trial participation. The results of these surveys are used to help guide future HD care and research strategies. Here you will find information on surveys being performed by the HD research community that would benefit from your feedback.

HDSA works with researchers and students to review survey materials and Institutional Review Board (IRB) approvals and we only provide links to approved surveys. If you have a question about our vetting process, or you are a researcher with a survey to share, please contact Leora Fox at Lfox@hdsa.org. If you have a question about any of the surveys listed here, please contact the study coordinators directly.

Current Surveys

HD Research Survey on Occupational Therapy

Investigators at CUNY York College invite you to participate in a study that seeks to understand the interests and quality of life of people living with Huntington’s disease. Research has shown that people with HD may benefit from modified activities such as tai chi, dance, gardening, and exercise programs. These can help in reducing negative physical and emotional symptoms associated with HD such as minimizing anxiety and risk of falls. This 5-minute survey is open to individuals with HD as well as their caregivers.

Thank you for your time and consideration in assisting with this research project. To proceed, please click on the following links. First, complete the consent form giving your approval to participate. Next, click on this link for the survey.

Apathy in HD Study

Researchers from Monash University in Australia are seeking people with the HD gene as well as their partners or carers to complete a short, 15-minute online survey about their health, mood and activities to help us better understand how apathy (a loss of motivation) occurs across the lifespan of people with the Huntingtin gene.

This is important as apathy negatively affects people’s engagement with their friends, families and everyday activities. These effects are often also felt by family members, so we are also seeking responses from partners and carers of a person with HD. If you would be interested in participating in this research, the links to the consent form and surveys can be found below.

If you are HD gene positive, please complete the HD Participant Questionnaire.

If you are a partner or caregiver, please complete the HD Partner Questionnaire.

You may contact doctoral student Kelly Atkins, Kelly.atkins@monash.edu,with questions about this research.

Huntington’s Disease Survey

We invite you to participate in a research study conducted by investigators at The University of Pennsylvania. The purpose of this study is to evaluate the knowledge and perception of individuals towards gene therapy for Huntington’s Disease (HD).This survey is meant to obtain information about an individual’s beliefs and attitudes towards gene therapy for HD… LEARN MORE

Juvenile HD Survey

Investigators at the University of Iowa are conducting a study about symptoms of Juvenile Huntington’s Disease (JHD) that may occur frequently, but are poorly recognized by health care professionals. We are inviting adults who have been the primary caretaker for someone who has been diagnosed with JHD to complete an online survey to describe… LEARN MORE