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mitoWEAR

Longitudinal patient monitoring with wearable devices

project home: Heidelberg

State of the art

eHealth and the availability of devices for remote patient monitoring (RPM) hold promise to improve diagnosis and treatment of disease and to even promote wellness. RPM will allow clinicians to record protracted phenotypes semi-continuously in settings where the phenotypes are experienced. A key hurdle for wider adoption of these devices, however, is convincing demonstration of their reliability and utility. Mitochondrial disease patients frequently present with exercise intolerance that can manifest after short, medium or long periods of exertion. Exercise-related tests to measure these symptoms are notoriously difficult to perform in the clinic due to time constraints, variability of symptoms and influence from learned patient behaviors. In mitoWEAR, we provide a small representative cohort of the mitoREGISTRY with RPM wrist-based activity tracking devices to monitor daily exertion, day-to-day physiological variation and protracted response to exercise tests performed at home on a rotating weekly basis for 10 months. Patient performance on established exercise tests will be benchmarked with clinical data to establish the validity of RPM measurements for mitochondrial diseases. Both test-specific and daily activity measures will be correlated with additional patient-specific phenotypes catalogued in mitoREGISTER, including disease type, etiology, severity and progression, to determine whether fitness measures are accurate proxies for clinically relevant classifications.

Targets

In a first mitochondrial eHealth project, mitoWEAR aims to evaluate the utility of wearable activity monitors as possible new endpoints to improve design and quality of future therapy trials, in particular regarding exercise-related symptoms that are very frequent in mitochondrial diseases but notoriously difficult to investigate in clinic Overarching goals of the project include: (1) Evaluation of the utility of wearable activity monitors to record and capture protracted phenotypes, notably exercise intolerance symptoms that are often reported in mitochondrial disorders but are notoriously difficult to measure in the clinic (2) Determination of which measurements reported by these devices are most highly correlated with clinical signs and symptoms, including post-exertion fatigue (e.g. heart rate, steps per day, sleep duration and levels, distance traveled). Quantify predictive performance of longitudinal activity monitoring for patient stratification and identification of subgroups with different mitochondrial disorders and/or disease severity. (3) Measurement of variability in patient response to functional tests on a daily, weekly and monthly basis and determine whether these changes correlate with disease progression.

Project management and contact address

Lars M. Steinmetz, Prof. Dr.

European Molecular Biology Laboratory (EMBL)

Life Science Alliance

Meyerhofstraße 1, 69117 Heidelberg

Phone: +49 6221 - 387 - 389

Project members

Prof. Dr. med. Thomas, Klopstock (Sprecher / speaker)

Thomas Klopstock (Sprecher / speaker), Prof. Dr. med.

University of Munich

Department of Neurology, Friedrich-Baur-Institut

Ziemssenstr. 1, 80336 München

Phone: +49 89 - 4400 - 57400

Fax: +49 89 - 4400 - 57402

Web: http://www.baur-institut.de

Cornelia Kornblum, Prof. Dr. med.

University clinic of Bonn

Klinik und Poliklinik für Neurologie (e)

Sigmund-Freud-Str. 25, 53105 Bonn

Phone: ++49 228 - 287 - 15712

Web: www.ukb.uni-bonn.de