Purpose/Goals of Study
We are conducting a study to examine the day-to-day variability of speech and its relationship to health-related quality of life (HRQOL) in people with Huntington disease (HD). We believe it is important to measure HD speech and language experiences at home, as people go about their daily lives. In-home monitoring is becoming more common in research, however, almost nothing is known about the feasibility of in-home monitoring in people with HD. Therefore, the aim of this study is to examine feasibility of a 7-day home-monitoring study in people with HD.
What do I have to do?
The study involves an in-person study visits and a 7-day home monitoring period and a follow-up interview. The in-person visit will take ~30 minutes and participants will complete a few speech tasks and receive instructions and equipment for the 7-day home monitoring period (including the completion of an online baseline survey). During the 7-day home monitoring period, participants will answer a question about their speech on the study app 3 times per day and complete a short survey and the speech tasks each evening; these activities will take about 25 minutes per day. We will make arrangements to return the study equipment and complete a 10-15 minute follow-up interview (either via telephone or in-person) to share your feelings about what is was like to participate in the study.
Who is Eligible?
Participants in this study must:
- Have 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
- Own a smartphone and be willing to use it for the study
- Be willing to share coded data from your most recent Enroll-HD study visit
Participants will receive up to $95 for completing this study.
Study Line: 734-764-0644