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Digital monitoring of Huntington’s disease with smartphone and smartwatch wearable technology: The Digital-HD study

R. Tortelli, T. Kilchenmann, F. Rodrigues, L. Byrne, A. Bamdadian, F. Lipsmeier, S. Schobel, M. Lindemann, E. Wild (London, United Kingdom)

Meeting: 2019 International Congress

Abstract Number: 49

Keywords: Chorea (also see specific diagnoses, Huntingtons disease, etc): Clinical features, Scales

Session Information

Date: Monday, September 23, 2019

Session Title: Huntington’s Disease

Session Time: 1:45pm-3:15pm

Location: Agora 3 West, Level 3

Objective: To investigate the tolerability and feasibility of using wearable smartphone and smartwatch technologies to monitor the motor, behavioural, cognitive and quality of life (QoL) impact of Huntington’s disease (HD), and generate reliable and meaningful biomarkers of disease progression.

Background: Advances in wearable sensors and communication technologies permit unobtrusive, continuous, accurate, real-world monitoring of chronic diseases. This has the potential to overcome many limitations of clinic-based, intermittently administered clinical measures.

Method: The Digital-HD study is a single-centre, prospective observational study that aims to enrol patients with manifest HD (n=40), pre-manifest HD (n=20) and healthy controls (n=20). Data are captured from passive monitoring and daily active tests. Passive monitoring involves wearing a smartwatch and carrying a GPS-enabled smartphone, both containing tri-axial accelerometers and gyroscopes. Active tests measure motor and non-motor manifestations of HD, and include questions about QoL and mood, cognitive tests, and motor tasks. Participants are trained on active tests during an on-site equipment issue visit (EIV) and perform these tests at home upon prompting. During the EIV, participants undergo clinical assessments using the Unified HD Rating Scale motor, cognitive and functional subscales, as well as the Timed-up-and-go test and selected items from the Berg Balance Scale alongside a Kinect sensor. These in-clinic tests are used to “anchor” the digital biomarker assessments. Encrypted phone data are securely transferred via the internet and analysed to extract clinically meaningful measurements for group discrimination and correlation with clinical parameters.

Results: The study is ongoing; recruitment began in January 2019 and will be completed by June 2019. Representative examples of digital and in-clinic data will be presented, along with interim data on acceptability and adherence.

Conclusion: This is the first study to compare the use of wearable technologies for continuous monitoring in patients at various stages of HD and healthy controls. Thanks to the high temporal and spatial resolution of this approach, it has the potential to generate sensitive, accurate and meaningful outcomes to enhance the conduct of clinical trials in HD. *ML and EJW share senior authorship.

To cite this abstract in AMA style:

R. Tortelli, T. Kilchenmann, F. Rodrigues, L. Byrne, A. Bamdadian, F. Lipsmeier, S. Schobel, M. Lindemann, E. Wild. Digital monitoring of Huntington’s disease with smartphone and smartwatch wearable technology: The Digital-HD study [abstract]. Mov Disord. 2019; 34 (suppl 2). https://www.mdsabstracts.org/abstract/digital-monitoring-of-huntingtons-disease-with-smartphone-and-smartwatch-wearable-technology-the-digital-hd-study/. Accessed June 15, 2025.
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