Danielle Larson, MD

Neurology Fellow, Danny Bega, Northwestern University Feinberg School of Medicine

TeleHD: Feasibility, validity, and value of telemedicine for motor and non-motor assessments in patients with Huntington’s disease

Telemedicine is the use of video conferencing for meetings between patients and medical care professionals. This technology is being used more frequently for clinic visits and for research purposes. One main advantage of “televisits” is that they decrease the time and travel burden for patients, and allow patients to see specialists that practice far away. We are conducting a study on the use of telemedicine for individuals with Huntington’s disease (HD). We believe that televisits can be used to assess the motor and non-motor symptoms of HD as effectively as in-person clinic visits. We also believe that individuals with HD and their families will prefer to have some visits with their neurologist done remotely, as a televisit can save time, and decrease travel-related cost and stress. Our study will aim to confirm these beliefs by evaluating 40 individuals with HD who receive care at Northwestern University’s HDSA Center of Excellence. Each individual will complete two regular in-person clinic visits and two televisits. The in-person visits and the televisits will be compared to determine if HD symptoms are assessed similarly and accurately. Participants and their caregivers will complete a survey on their satisfaction with televisits and their preference for in-person or televisits, and will indicate if televisits decreased their time and cost burden. If our study shows that televisits can be effective for assessing HD symptoms, and that HD individuals and their families are satisfied by televisits, this will inform the Neurology community that televisits can and should be done for our patients with HD to improve their clinical care and the HD research field.