Researchers are trialing an app to better measure the progression of Motor Neuron Disease (MND) and Amyotrophic Lateral Sclerosis (ALS) across five ALS medical facilities.
The app, called ALS iNVOLVE/eNGAGE, was launched by the non-profit ALS Never Surrender Foundation and supported by a $300,000 grant from the ALS Association. ALS, also known as Lou Gehrig’s Disease, is a progressive neurogenerative disease.
ALS iNVOLVE/eNGAGE is designed to allow patients to track more than 80 metrics for range of motion, muscle control, dexterity, breathing and other vitals. The goal is to create a patient progression database for research.
The app runs on Apple’s iPhone and is built with Claris Filemaker’s Workplace Innovation Platform. Aural Analytics provides the speech and breathing analysis. Google AI, IBM Watson and Apple will provide analysis of functional measurements data generated by the app. None of those tech giants have influenced the app, but will review the data and provide insights after analysis.
Trials will start with 50 patients of varying ages, genders and geographies. Five ALS medical facilities–Harvard/Massachusetts General Hospital, Duke University, Barrow Neurological Institute, University of California, San Diego and the University of Colorado, Denver–will participate.
Current ALS progression surveys are subjective and symptoms are underreported. The goal of the ALS eNGAGE app is to fill in gaps with patient self monitoring. Clinicians will also be able to proactively respond to patients as symptoms change. Typically ALS patients see their clinicians once a quarter and with an average survival rate of 2 to 5 years from diagnosis there are usually only 240 data points logged.
ALS iNVOLVE/eNGAGE aims to gather 116,000 data points per patient from diagnosis to death. These data points include speech changes to track disease progression via Aural Analytics software. ALS patients still self-log their symptoms but the technology in the app will be able to make the process more simple and enable sharing with medical institutions.
The ALS Never Surrender Foundation aims to submit the app to the US Food & Drug Administration for approval to be used as a medical device.