With $300K Grant, ALS Never Surrender Foundation Launches Mobile App to Track Disease Progression

With $300K Grant, ALS Never Surrender Foundation Launches Mobile App to Track Disease Progression
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The ALS Association has awarded the nonprofit ALS Never Surrender Foundation a $300,000 grant to bring its precision point mobile technology app to patient progression research trials nationwide.

Called ALS iNVOLVE/eNGAGE, the application enables the remote tracking of vitals including muscle control, dexterity, speech, breathing and more than 80 range-of-motion metrics. This tracking gives researchers a much more comprehensive and nuanced progression database in ALS, the most common motor neuron disease (MND).

“Current progression surveys are subjective, and occasionally patients do not accurately report the changes with their mobility, mostly out of a desire to remain positive, or to shield their family members from their suffering and disease progression,” Nic Friedman, CEO of ALS eNGAGE, said in a press release.

“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 MND/ALS treatments.”

Investigations are expected to start this month at five ALS medical centers: Duke University, Harvard Medical School/Massachusetts General Hospital, Barrow Neurological Institute, the University of California, San Diego and the University of Colorado, Denver. The studies will involve 50 patients of varying ages, genders, and geography.

The app will operate on the universal Claris FileMaker’s Workplace Innovation Platform. In collaboration, Google AI, IBM Watson, and Apple will handle physical measurement data analyses, while Aural Analytics will perform speech and breathing assessments through its speech analytics platform, which tracks speech components to measure barely perceptible, but clinically pertinent, speech changes through nervous system function.

“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, Aural Analytics co-founder and CEO.

Although ALS is a progressive disease, most patients only see their medical team quarterly, which means symptom changes are only charted four times annually and roughly eight to 20 times throughout a patient’s journey.

“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,” Friedman said. “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 affective treatment for ALS.”

The foundation plans to seek permission from the U.S. Food and Drug Administration to allow the app to be used as a medical device. Approval would make iNVOLVE/eNGAGE available to the roughly 35,000 ALS patients in the United States and more than 250,000 worldwide.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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