For those interested in contributing to MS Mosaic, Hartsell and Heller have developed MS Artisans, a community of collaborators working across every aspect of the project, from technology development and data science to disease education and care improvement.
“Good science and technology don’t interrupt your life; they stay in the background, so they can capture an accurate picture of your life,” Hartsell says. “This helps inform science and tech design to ultimately help you do more—this app is our first attempt at this ideal and has been a labor of love for the last 18 months. It’s taken considerable effort and support from many here at Duke, and we’re excited to be able to offer it.”
The app is being used in a prospective, observational clinical trial led by Hartsell and fellow MS Mosaic app-developer, Duke statistician Katherine Heller, PhD, MS. Begun in September 2017, the study seeks to characterize the relationship between fluctuations in MS symptoms and medications and length and extent of disease by studying 4 cohorts defined by type of MS: 1) relapsing-remitting MS, 2) primary progressive MS, 3) secondary progressive MS, and 4) no MS.
Study participants use the app to take performance tests once a week. These include a hand coordination and fatigue assessment, a walking speed test, and a timed addition test. Data on step counts and hours slept are collected by iPhone’s built-in sensors.
The study has 3 primary outcome measures:
- Change in perceived severity of fatigue
- Change in perceived cognitive impairment
- Change in perceived depression or anxiety severity
Secondary outcome measures include changes in perceived walking instability, vision difficulties, bowel/bladder dysfunction, and sleep quality, among others.
Ultimately, Hartsell and Heller hope that, in addition to leading to better treatment for people with MS, the study’s use of a mobile app will provide information on how mobile devices can measure MS severity and progression and improve the way these tools are used to manage MS.
“With this app and planned extension studies, we hope to deliver on the promise of mobile health,” Hartsell concludes