Using Digital Data to Quantify Behavior and Function in ALS and Hasten Drug Development

Explore the use of digital data in quantifying behavior and function in ALS and accelerating drug development in this comprehensive lecture. Delve into the Helios Platform, ALS Functional Rating, and various digital outcome measures. Learn about passive data monitoring techniques, including BIWI and personal cell phone usage. Examine speech diagnostics, communication participation, and self-entry scales. Discover insights on fatigue, speaking rate, and gait speed through digital ALS monitoring. Investigate the potential of internet search data and digital biomarkers in ALS research. Gain understanding of the challenges and future directions in using digital data for ALS studies, including the Dial and Family Studies. Presented by Dr. James Berry, this talk covers groundbreaking approaches to ALS research and drug development using digital technologies.

Syllabus

Introduction
Background
About ALS
Helios Platform
ALS Functional Rating
Digital Outcome Measures
Traditional Outcome Measures
Passive Data Monitoring
BIWI
Personal Cell Phones
Ground Truth Data
Speech Diagnostics
Communication Participation
Coffee Reporting
SelfEntry Scale
Compliance
Digital ALS
What we learned
Fatigue
Speaking Rate
Gate Speed
NQ Medical
Internet Search Data
Study Results
Using Data to Explore Health
Prevent ALS
Dial and Family Studies
Challenges
Digital Biomarkers
Conclusion
Future Directions
Collaborators