Proving the Business Case for the Internet of Things

Mobile app boosts ALS disease data collection

William Payne
November 13, 2019

Research into ALS, or motor neurone disease, has received a boost with the launch of a mobile app to track the progression of the disease in nationwide clinical trials across the United States. Using precision point technology, the new mobile app will provide nearly 500 times more data from each patient about the progression of the disease than current clinical trial techniques.

The ALS Never Surrender Foundation has announced a $300,000 grant to support the adoption of the mobile app in clinical trials, and the programme is also supported by input from experts in Google AI, IBM Watson, Apple, and Aural Analytics Inc.

The ALS iNVOLVE/eNGAGE app has been developed by the ALS Never Surrender Foundation, which is a volunteer-based, non-profit organisation which is seeking a cure for motor neuron disease and Amyotrophic Lateral Sclerosis.

The precision point mobile technology app allows patients to remotely track over 80 metrics of range of motion, muscle control, dexterity, breathing, speech and other key vitals on a universal platform, creating an exponentially richer patient progression database to study.

Trials will commence this month with 50 patients of all ages, genders and geographies, across five ALS medical facilities, including Harvard/Massachusetts General Hospital, Duke University, Barrow Neurological Institute, University of California, San Diego and the University of Colorado, Denver. The app will run on Claris FileMaker's Workplace Innovation Platform and will partner with experts from Google AI, IBM Watson, and Apple for physical measurement data analysis and Aural Analytics, Inc. for speech and breathing analysis.

"Current progression surveys are subjective, and occasionally patients do not accurately report the changes with their mobility, mostly out of the desire to remain positive, or to shield their family members from their suffering and disease progression," said Nic Friedman, chief executive officer, ALS eNGAGE. "With this funding, we will see the role this technology can play in patient self-monitoring. Additionally, our mobile app enables clinical support teams to proactively respond to their patients' needs as their symptoms change. It will also provide critical data to researchers who are trying to identify trends to assess the impact of new therapies for MND/ALS treatments."

Often referred to as Lou Gehrig's Disease, ALS is a progressive neurodegenerative disease that slowly robs the body of its ability to walk, speak, swallow and breathe. Living with an ALS diagnosis means coping with symptoms that change, yet most ALS patients only see their clinical support team once every three months, which means changes are only tracked four times a year. With the average survival rate of an ALS patient being two to five years from diagnosis, that means there are only between 8 and 20 points in time logged using these traditional methods.

"Through our ALS iNVOLVE/eNGAGE app, researchers can now gather 116,000 data points per patient from diagnosis until death as opposed to other technologies which gather just 240 points of data per patient for the same time period," said Friedman. "Through the increased sharing of data on a large, global scale, we aim to leverage accurate and measurable progression data to support a worldwide approach to identifying trends in ALS progression research. We believe this will ultimately lead to the development and discovery of an effective treatment for ALS."

The ALS iNVOLVE/eNGAGE app is also supported by the Aural Analytics speech analytics platform, which tracks vocal biomarkers (components of speech) to measure subtle, but clinically-relevant speech changes in patients by tapping directly into various nervous system functions.

"The app features our speech analytics platform, which will enable accurate and objective gathering of clinically-relevant measures of speech changes that will track disease progression, non-invasively, in the clinic or at home, over time," said Daniel Jones, co-founder and chief executive officer of Aural Analytics, Inc. "We're thrilled to join forces with other leading technology and science innovators and the ALS Never Surrender Foundation to bring this important clinical research to light and ultimately to help broaden the understanding of this disease."

The ALS Never Surrender Foundation aims to submit for U.S. Food & Drug Administration approval for the ALS iNVOLVE/eNGAGE app to be used as a medical device and make it accessible to the 35,000 ALS patients in the U.S. and the 250,000+ ALS patients globally.