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

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 Martins holds a BSc in Cell and Molecular Biology from Universidade Nova de Lisboa and is currently finishing her PhD in Biomedical Sciences at Universidade de Lisboa. Her work has been focused on blood vessels and their role in both hematopoiesis and cancer development.
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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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6 comments

  1. Dave Reckonin says:

    “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.”

    Today’s Big Lie.

    Watching a slow-motion car crash on camera does not allow you to find the best way of stopping car crashes.

    Waste …waste ….waste of money.

    Spend it on finding a treatment… or better yet.. a cure.

  2. Bill says:

    I totally agree with the project. If for nothing else to see real data on the effectiveness of treatments. Do I spend the time and money for Radicava? Do I start Riluzole despite my Docs thought it will not help in my case ? Do the various big bucks supplements actually work? Society spends millions on drug trials then forgets about getting real life data from thousands of pALS- forget opinions as they are inherently biased. We are left to make major decisions without real data but purely anecdotally.
    Additionally, are there individual trends which would better predict our progression? Who knows as the data are not gathered and analyzed.
    All these things could be easily done if we had a common data collection platform. I don’t think it will lead to a cure but I think it will make our choices more informed.

    • Dave Reckonin says:

      “Do I start Riluzole despite my Docs thought it will not help in my case ?”

      Yes. Doctors love it when you go against their advice.

      There’s overwhelming evidence that Riluzole is completely ineffective if you have had symptoms for 15 months.

      As to Radicava you would be better applying your investigative energy to simply getting MT Pharma to publicly disclose the stats on the efficacy of their golden-egg gloop, something for which they are deafeningly silent, except for the sound of cash registers rattling endlessly.

      There is already a huge amount of progression data out there and aPALS is being constantly monitored at their clinic. Clinicians there are not fooled by patients’ psychotic cheerfulness.

      ‘…precision point mobile technology app …’
      Sounds like a Marketing Project.

      “Researchers can now gather 116,000 data points per patient…”
      ‘So, what do you think,doc?’
      ‘Hold on there … I’m only on point 35…give me about three years to go through the other 115965 items, ok?’

      Just whom do they think they are kidding ?

      There’s an awful lot of money to be made from just looking at things.
      This brings the marketeers seeping out of the woodwork at nightfall.

  3. Liz says:

    Why not connect this with the PMP project at ALSTDI & combine the data allowing progression trends to be linked with genome information?

  4. Christopher says:

    If only there was money in a cure. Apparently, good intentions does pave the road to hell. Or ALS.
    The focus on these helpful hospice ideas are truly amazing. If all of this focus was targeted at a actual cure. Wait…not enough green paper involved.

    I still consider myself optimistic. Unfortunately, i’m losing hope in most human beings.
    It’s sad and amazing.

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