ALS app bringing patient progression research trials across the U.S.

The ALS Never Surrender Foundation, a volunteer-based, non-profit organization seeking to cure Motor Neuron Disease (MND) and Amyotrophic Lateral Sclerosis (ALS), announced a $300,000 grant from the ALS Association to bring its ALS iNVOLVE/eNGAGE app to MND/ALS patient progression research trials across the U.S. 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.

ALS app trials

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. 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," said Nic Friedman, chief executive officer, ALS eNGAGE.

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. 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," said Nic Friedman, chief executive officer, ALS eNGAGE.

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 the 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. 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," said Daniel Jones, co-founder, and chief executive officer of Aural Analytics, Inc.

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.

Key Highlights

Problem: 

• 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

This means changes are only currently 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.

• 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

Solution: 

• The ALS Never Surrender Foundation, a volunteer-based, non-profit organization seeking to cure Motor Neuron Disease (MND) and Amyotrophic Lateral Sclerosis (ALS), today announced a $300,000 grant from the ALS Association
• The grant was awarded to bring the ALS iNVOLVE/eNGAGE app to MND/ALS patient progression research trials across the U.S.

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.

Benefits: 

• Through the ALS iNVOLVE/eNGAGE app, researchers can now gather 116,000 data points per patient from diagnosis until death as opposed to other technologies that gather just 240 points of data per patient for the same time period
• Increased sharing of data on a large, global scale, can produce accurate and measurable progression data to support a worldwide approach to identifying trends in ALS progression research

The new mobile app enables clinical support teams to proactively respond to their patients' needs as their symptoms change. 

• It also provides critical data to researchers who are trying to identify trends to assess the impact of new therapies for MND/ALS treatments
• ALS Never Surrender believes 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 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.

What's Next:

Trials will commence this month with 50 patients of all ages, genders, and geographies.

• ALS medical facilities participating include Harvard/Massachusetts General Hospital, Duke University, Barrow Neurological Institute, University of California, San Diego and the University of Colorado, Denver
• 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

With FDA approval, the app will be accessible to the 35,000 ALS patients in the U.S. and the 250,000+ ALS patients globally.

Additional Quotes

"This is a perfect example of what can be accomplished when you're able to put powerful, custom technology directly in the hands of medical professionals and, in this case, the patients themselves. By taking a simple and affordable approach to learning more about this insidious disease, we are equipping the problem-solvers out there with the tools they need and we couldn't be prouder to be a part of this incredible development for the ALS community," said Brad Freitag, chief executive officer of Claris.

"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," said Daniel Jones, co-founder, and chief executive officer of Aural Analytics, Inc.