“Help Us Answer ALS”
An “App” Specifically Designed to Track ALS Progression
ALS is a complex disease that may affect patients very differently. To learn as much as possible about how the disease course varies from patient to patient and over time, the goal was to move beyond the clinic to a system that allows frequent, home-based assessments.
To help track ALS disease progression, Answer ALS worked with a team of software engineers at the Kata Lab at Johns Hopkins, to create a unique app called “Help us Answer ALS.” The app was designed to monitor fine motor control in the upper body, speech and cognition. To do this, the app has seven task modules; one for each day of the week.
When it is time to complete a task, the participant will receive a reminder or prompt on their device. They can then select that task from a menu (see side image) and complete the challenge. Designed to be highly engaging and game-like, the app will record essential movement data from a series of sensors while the participant is busy “playing” the game.
In an exciting collaboration with IBM Watson, the team has incorporated a speech analysis module into the app. This module will include a series of tasks that will help to track and assess both speech and cognition. The participant will be asked to either read a set passage or describe a scene from a picture in their own words. Voice recordings will then be assessed by a computational linguistics tool developed by IBM Watson.
The development of such advanced technology and analytics provides us with an unprecedented opportunity to track and follow disease course. Our understanding of ALS can move beyond that which a clinician can garner in a routine office visit and progress to frequent, home-based assessments.
Study participants will be directed to download the app from the iOS app store
and given a code to start their participation.