Study of Digital Tools to Monitor Movement and Symptoms in Adults with Huntingtons Disease and Healthy Controls

What this Trial Is About

Researchers are evaluating the use of digital devices to passively monitor walking patterns and involuntary movements called chorea in adults with Huntingtons Disease HD. This observational study aims to determine how meaningful these digital measurements are for patients with HD and their care partners. The study involves participants with genetically confirmed adult-onset HD as well as healthy controls, with possible extension to yearly visits over three years. Participants will use wearable devices, including the ActiGraph LEAP and Axivity AX6, which collect continuous data on movement, sleep, heart rate, and other vital signs. The study groups include HD patients at different disease stages and healthy controls. Study visits are virtual and involve surveys on movement and cognition, in-home movement assessments, and interviews about how gait and chorea affect daily life. During the study, participants and their care partners will complete four virtual visits to answer questions, perform movement tasks, and share their experiences. Researchers will analyze interviews for symptom impact and compare device data for reliability and validity of measuring chorea and stride time variability. The total participation time varies, with possible study extension to three years involving annual visits to monitor these digital measures and their relevance to daily living.

Digital Measures for Clinical Trial Endpoints in Huntington's Disease