The ALS Never Surrender Foundation has received a $300,000 grant from The ALS Association to support the iNVOLVE/eNGAGE app for the condition.
The mobile technology app will be used in Motor Neuron Disease (MND) / Amyotrophic Lateral Sclerosis (ALS) patient progression research trials in the US.
The ALS iNVOLVE/eNGAGE app will partner with experts from Google AI, IBM Watson, and Apple for physical measurement data analysis.
It also includes a partnership with Aural Analytics for speech and breathing analysis.
The app is designed to allow patients to track over 80 metrics of key information such as motion, muscle control, dexterity, breathing, speech and others on a remote global platform.
It will operate on Claris FileMaker’s Workplace Innovation Platform and help develop a patient progression database for researchers to study.
Expected to start this month across five ALS medical facilities, the trials will include 50 patients of all ages, genders and geographies.
ALS eNGAGE CEO Nic Friedman said: “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.
“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.”
ALS is a rare progressive neurodegenerative disease caused by the dysfunction of nerves that control voluntary muscular movement.
The disorder is also known as Lou Gehrig’s disease.
Friedman added: “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.”