Multiple Sclerosis researchers aren’t phoning it in
Multiple sclerosis is a multifaceted neurological disorder that can perplex scientists. To fill in the gaps in their knowledge, researchers are now looking to mobile phone technology.
In Multiple Sclerosis (MS), a condition that affects an estimated 2.3 million people worldwide, the body’s immune system attacks the central nervous system, interrupting and distorting impulses traveling between the brain and the body.
MS symptoms can include fatigue, numbness and tingling, weakness, walking difficulties, bladder and bowel problems, and cognitive changes. Some less common symptoms are speech problems, tremors, breathing problems, headache, and seizures.
MS symptoms vary and can be triggered by things like stress or temperature extremes. Because every person who has MS experiences it differently, it is difficult for scientists to grasp.
MS Mosaic will help researchers better understand how patients live with MS from day to day.
Designed by Thread Research, MS Mosaic employs surveys and tasks to record and track MS symptoms.
To get involved, participants download the app, sign up for an MS Mosaic account, and start answering health questions. Each day, the app will prompt users to rate the severity of 19 symptoms on a scale of zero to five.
The app also asks if the user feels he or she is having a relapse. A relapse, also known as a flare-up or exacerbation, is marked by the occurrence of new symptoms or a worsening of existing symptoms.
On some days, MS Mosaic assigns physical tasks to complete. One activity has participants walk 25 steps forward and back with the phone attached to the body to test the functionality of the walk.
Another task is tapping the iPhone screen repeatedly to test fatigability, motor speed, and coordination.
There is a test that involves adding a series of numbers, another that requires the person to move a virtual peg across the phone screen, and a game that tests short-term memory.
Hartsell says the app will soon incorporate artificial intelligence to improve predictive ability. “AI will prove invaluable,” he says. “Very soon we hope to use machine learning to identify patterns in our data that can help explain the seemingly random symptom fluctuations people with MS experience.”
Hartsell believes that AI will help the researchers identify related symptoms, and generate algorithms that can predict symptom changes. He hopes that as the data becomes larger, the app will be able to deliver personalized insights to users.
Researchers also hope that insights gained from the Mosaic study will help customize symptom management and one day influence all MS care. One of the study’s goals is to understand why some people with MS experience different symptoms than others, and why symptoms can vary over time.
The study is open to anyone 18 or older (with or without MS) who lives in the US and is comfortable reading English. There are currently around 300 people enrolled, and enrollment is increasing each week, Hartsell says.
Hartsell is seeking to increase participation in this study and also to recruit members to the Mosaic research team. The MS Mosaic Artisans Project aims to assemble the skills of MS patients, care partners, researchers, and clinicians to share information in the areas of platform development, data science, disease education, and care improvement.
If you would like to help or learn more about this study and find resources about Multiple Sclerosis, visit the MS Mosaic web site.