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Wearable device and smartphone data quantify ALS progression and may provide novel outcome measures
Stephen A Johnson1, Marta Karas2, Katherine M Burke3
1Mayo Clinic, Department of Neurology, Scottsdale, AZ, USA. johnson.stephen2@mayo.edu.
NPJ Digital Medicine
|March 6, 2023
Summary
Mobile apps and wearable devices can effectively track Amyotrophic Lateral Sclerosis (ALS) progression. This digital data shows promise for developing new outcome measures in ALS clinical trials.
Area of Science:
- Neurology
- Biomedical Engineering
- Digital Health
Background:
- Traditional methods for measuring Amyotrophic Lateral Sclerosis (ALS) progression in clinical trials rely on staff-administered scales.
- There is a need for more objective and frequent measures of disease progression in ALS therapeutic development.
- Mobile applications and wearable devices offer potential for active and passive data collection.
Purpose of the Study:
- To evaluate the feasibility of using mobile apps and wearable devices to quantify ALS disease progression.
- To assess the utility of active (surveys) and passive (sensor) data collection in ambulatory adults with ALS.
Main Methods:
- Forty ambulatory adults with ALS participated in a 6-month study.
- The Beiwe mobile application was used for self-administered surveys: ALS Functional Rating Scale-Revised (ALSFRS-RSE) and Rasch Overall ALS Disability Scale (ROADS).
- Participants continuously wore wrist-worn or ankle-worn activity monitors to collect passive sensor data.
Main Results:
- High correlation was observed between the ALS Functional Rating Scale-Revised (ALSFRS-R) and the self-entry version (ALSFRS-RSE).
- Several daily physical activity measures from wearable devices showed statistically significant changes over time.
- Wearable device data demonstrated associations with ALSFRS-RSE and ROADS scores, indicating disease progression.
Conclusions:
- Active and passive digital data collection using mobile apps and wearable devices are feasible in ALS patients.
- These digital tools show promise as novel outcome measures for future Amyotrophic Lateral Sclerosis clinical trials.
- This approach may enhance the precision and efficiency of evaluating therapeutic efficacy in ALS.

