Research participation is essential in the quest for HD treatments and knowledge, not only in pursuit of drug development but also to improve care and quality of life. In-person participation is not possible for everyone, but many HD researchers and care professionals worldwide are conducting studies than can be completed online. HDSA works with students, scientists, and clinicians to review their university-approved studies and share them with the HD community. To assist these investigators in their studies of the impacts of HD, check out these online research opportunities that can be completed from the comfort of your own home.
Assessing Thinking Patterns in Huntington’s Disease
Researchers from the University of Virginia are studying how certain thinking patterns affect mood and anxiety symptoms in Huntington’s disease. Individuals over the age of 21 who have been diagnosed with HD and who have never been diagnosed with dementia are invited to complete an online survey, approximately 30 minutes long. Participants will be compensated with up to $50 in gift cards. If you are interested in participating in this study, please click here.
Compensated Interview Study for People Taking Deutetrabenazine (Austedo)
M3 Global Research invites individuals in the US who have been diagnosed with Huntington’s Disease (HD) and have taken deutetrabenazine (Austedo) in the past 12 weeks to share their experience. The study entails a 75-minute web-assisted telephone interview and entitles participants to $125 of compensation.
If you are interested in participating, please complete this online survey to help determine if the study is a good fit for your experiences.
Measuring the Daily Stressors of Young People Affected by Huntington’s Disease
Researchers at Monash University in Australia are conducting a study to understand how young people are affected by HD. If you are between ages 18-35 and have HD in your family, consider completing this 30-minute online survey that will ask for your thoughts on daily stresses related to family, social relationships, and daily functioning.
Attitudes towards Huntington’s genetic testing
A team of researchers at the London Business School are studying people’s attitudes toward the difficult and complex decision of whether to test for Huntington’s disease and the psychological outcomes of testing. All people 18 and older who are HD-positive but asymptomatic, at-risk but not tested, or who have a loved one affected by HD are invited to participate in the 10-minute survey, linked here.
Developing Speech as a Biomarker for HD
In just five minutes, you can help researchers from the Linguistic Data Consortium at the University of Pennsylvania to develop a cutting-edge web app that uses speech to identify and track cognitive changes in neurodegenerative disorders. All adult English speakers can join this impactful research by performing simple tasks and submitting an audio sample here.
Decisions about Genetic Testing for HD
You are invited to participate in a study conducted by researchers at the University of Pennsylvania that compares how individuals at risk for HD and their close companions and loved ones think about predictive genetic testing for HD and weigh the decision of whether to test. If you are 18 or older and have ever considered or are currently considering genetic testing for HD, or have a close relationship with someone who has, you are eligible to participate in this short online survey and an optional, audio-only interview over Zoom.
Caregiving Across the Lifespan
A researcher at Towson University is conducting a study on Caregivers Across the Lifespan that includes self-assessment of caregiver experiences, personal characteristics, mental and physical health. If you are 18 years or older, able to complete the questionnaires yourself, and have provided care for a relative for at least one month, click on this link to participate.
