A Remotely Accessible Ecological Momentary Assessment and Actigraphy System for ALS Research

Healthcare-related research studies often deploy ecological momentary assessment techniques to sample information from participants in their natural environment. This paper presents an online system to support remote access of ecological self-report and actigraphy-based measurements for individuals with Amyotrophic Lateral Sclerosis (ALS) and their caregivers. The presented framework includes a custom mobile app and makes use of a web-based application programming interface for data collection with wrist-worn actigraphy devices. The system was evaluated with a research protocol to measure sleep, fatigue, and pain for individuals with ALS and their caregivers (N=8) over a consecutive seven-day period. Though daily self-report response rates were widespread (0%-100%) and the remote actigraphy collection varied in reliability, novel relationships between individuals with ALS and their caregivers were identified from the collected data. Online, ecological systems can support real-time remote monitoring and/or interventions to help understand diseases like ALS and advance healthcare research.