Pilot Study to Detect Amyotrophic Lateral Sclerosis Disease Progression with Wearable Sensors and Artificial Intelligence

Summary

We are using Fitbit smart watches to monitor people with amyotrophic lateral sclerosis (ALS) to develop better tools for measuring disease progression. ALS, often referred to as Lou Gehrig's disease, causes loss of strength in muscles of swallowing, breathing, and moving the arms and legs. Because ALS effects different parts of the body in each person, it is challenging to determine how quickly the disease is progressing and when treatment is helping. We will use movement and heart rate data collected from wearable devices to see if we can develop a machine learning model to monitor disease. Accurately monitoring ALS is important for developing new treatments and ensuring appropriate medical care.

Eligibility

Currently recruiting participants: Yes

Eligible gender: Male, Female, Transgender, Other

Eligible ages: 18 to 100

Inclusion criteria:

Requirements for participation are:
1. Diagnosis of ALS according to the Gold Coast Criteria.
2. Age 18 years or older at time of enrolment.
3. 3 years or less from symptom onset at the time of enrollment.
4. Independent ambulation at the time of enrollment (gait aids permitted).
5. Sufficient function or assistance to regularly wear and charge a wearable device and upload data.
6. Ownership of and ability to use a compatible smartphone.
7. Broadband internet connection at home.
8. Ability to attend the Calgary ALS clinic.
9. Ability to complete online self-assessments and respond to text messages at regular intervals.
10. Ability to complete self-assessments in English.
11. Co-consent to the Canadian Neuromuscular Disease Registry.
12. Capacity to provide informed consent.

Exclusion criteria:

People with ALS are not eligible if they:
1. Have a medical condition that significantly interferes with mobility.
2. Require a four-wheel walker for ambulation.
3. Use night time ventilatory support.

Participate

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Collection of personal information
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Additional information

Contact information

Dr. Gord Jewett

Principal investigator:

Lawrence Korngut

Clinical trial:

REB-ID:

REB22-0375