When was the last time you had a headache? Can you recall how bad it was on a scale of one to 10? If you can’t remember, you aren’t alone – our brains aren’t wired to retain small details over time.
But what if remembering these changes could make a difference in your health? This is what life is like for people living with multiple sclerosis (MS), a condition that usually leads to some level of disability. MS symptoms tend to vary, and people living with MS can typically recall some of their more obvious symptoms like trouble seeing or walking. Recalling more subtle changes, however, like problems thinking or speaking, can often be difficult. Yet, the subtle symptoms are equally important as they can signal new signs of disease progression.
“I generally see my patients once or twice a year, and while we have ‘gold standard’ in-office tests to evaluate for new disease activity, it is hard to capture all of the important fluctuations in their symptoms that occur between visits,” said Dr. Jennifer Graves, Associate Professor of Neurosciences and Director of Neuroimmunology Research at University of California, San Diego and Adjunct Professor at University of California, San Francisco. “Because MS symptoms vary day-by-day, we’ve known for quite some time that people’s experience outside of the doctor’s office may hold the key to better understanding and managing the disease.”
Now, the emergence of “Big Data” and wearable healthcare technology is making this a possibility. Just like smartphone technology can be used to track things like steps, calories and hours of sleep, a new study called FLOODLIGHT Open is using it to understand the effects of MS on mental and physical functioning in a real-world setting, enabling researchers to see “big picture” trends in the data that could help improve understanding of the disease and how it may lead to disability over time.
The Genentech-led study uses a mobile app designed with proprietary technology to track a person’s ability to perform simple tasks all year, versus the two or three days they see their neurologist.
People enrolling in the study are asked to complete a short series of tests in the app based on traditional clinical assessments they undergo at their doctor appointments, like the “25-foot walk” for walking ability and a “9-hole peg test” to assess dexterity. The app also uses the built-in capabilities of all smartphones to passively monitor walking ability and mobility throughout the day.
Genentech and Roche are working to enroll 10,000 patients globally in FLOODLIGHT Open over five years. The “open” means anyone can join the study and the data collected is freely available to doctors and researchers to help accelerate further research and inspire collaboration. Importantly, no personally identifiable information is entered into the FLOODLIGHT app, stored on people’s phone or in the database, so each person entering the study remains anonymous. People can choose to share their results with loved ones or their neurologists if they wish so their progress can be monitored over time.
Annette, 48, was diagnosed with Relapsing Remitting MS in 2015, and she recently entered into the FLOODLIGHT study after hearing about it from her doctor. For Annette, the opportunity to be involved in this type of research is exciting.
“Those of us living with MS want to do all that we can to help each other, so if participating in FLOODLIGHT Open helps doctors understand the disease and that turns into better care one day, I’m all for it. I also have elected to share my data with my doctor, so it gives me peace of mind to know that the app is tracking any changes in my health that I may have otherwise missed.”
Those of us living with MS want to do all that we can to help each other, so if participating in FLOODLIGHT Open helps doctors understand the disease and that turns into better care one day, I’m all for it.
- Annette, Person Living with MS
“The availability of this level of data to the medical community is an important step in better characterizing the disability MS patients face in their real-world settings, and the results from this study could one day lead to better treatments and care plans for patients,” continued Dr. Graves, who was an investigator of a trial at the University of California, San Francisco that helped evaluate the FLOODLIGHT technology.
To learn more and enroll, visit https://floodlightopen.com or download the FLOODLIGHT app on iTunes for iPhone or Google Play for Android.