Purpose/Goals of the Study
Researchers at UM are interested in understanding the day to day variability of self-reported symptoms (mood, functioning and sleep) in people with Huntington disease (HD). In order to collect this data, researchers need to administer surveys throughout the day for several days, while people go about their normal daily activities. This has been done successfully in people with other conditions but it hasn’t yet been done in people with HD. This study aims to see if it is feasible and acceptable to collect this type of data in people with HD, using surveys given on a smartphone app throughout the day for 14 days.
What do I have to do?
- Virtual Visit (videoconference on a platform like Zoom): 1 hour
- Complete a computer-based survey, download the study app and receive instructions for the home monitoring period.
- The study team will share data collected in the Enroll-HD study with this study (demographics, HD diagnosis information and HD clinical assessments).
- 14-day home monitoring period: 15 minutes/day
- Answer questions about speech, movement, and mood 3 times per day and complete a 10 minute survey at the end of each day, all on the study app.
- Phone Interview: 10-15 minutes
- Answer questions about experiences during the study. This will be audio recorded.
Who is Eligible?
- Have a positive gene test and/or a clinical diagnosis of Huntington disease
- Be at least 18 years old
- Be able to read and understand English
- Be able to provide informed consent
- Be willing to complete all study assessments, including being audio-recorded and sharing Enroll-HD data with this study
- Own a smartphone and be willing to use it for the study
Participants will receive up to $65 for completing this study.
Study Line: 734-764-0644