Even before ALS was finally given its present moment in the sun (under a bucket of ice that is), a team at TOM was hard at work trying to do our part to bring us closer to a cure for this chilling disease.
ALS-FRS is a project seeking to use the existing hardware in smartphones to allow for ALS patients to actively measure the progression of ALS in their own bodies. Borrowing from our good buddy Wikipedia: “The rate of progression can be measured using an outcome measure called the “ALS Functional Rating Scale Revised (ALSFRS-R)”, a 12-item instrument administered as a clinical interview or patient-reported questionnaire that produces a score between 48 (normal function) and 0 (severe disability).” Problem is, this test can only be done at a doctor’s office and, given that doctors can still do very little to help those with ALS besides make them comfortable, there is little motivation for people to go to the doctor to have themselves measured.
So, ALS-FRS is seeking to essentially utilize a smartphone as a “box of sensors” to allow for patients to measure themselves at home. They will be able to measure things like changes in their speech, handwriting, walking, and strength of breath.
The thing about ALS is, despite being known about for nearly a century, very little progress has been made in treating the disease. Beyond generating information that can be used in trying to treat individual ALS patients, ALS-FRS will also allow for creating a first of its kind pool of “Big Data” that will be made available to researchers to advance our knowledge about ALS and bring us closer to a cure in our time!
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