When was the last time your foot fell asleep? What about the last time you had a headache? Can you recall how bad it was on a scale of one to 10? Chances are that you can’t.

But what if remembering these changes could make a difference to your health? For people living with multiple sclerosis (MS) — a chronic condition where the body’s immune system behaves abnormally and attacks the brain, spinal cord and optic nerves of the central nervous system (CNS) — understanding these changes could help lead to improvements in treatment. MS symptoms vary greatly between people and while those living with the disease can typically recall some of their more obvious symptoms like trouble seeing or walking, they may not remember all of the smaller details. Yet, the subtle symptoms may be just as important as they can signal new signs of disease progression.

“Although we have made immense progress in the field of MS in the past two decades, the more we learn, the more realize that there is still much to be learned,” says Dr. Jiwon Oh, a neurologist and researcher at St. Michael’s Hospital in Toronto. “From a clinical perspective, we are realizing that there are many symptoms that patients have that are difficult to detect in the clinic.  Developing better tools to detect and monitor subtle MS symptoms is an important unmet need in the field.”

Many researchers and physicians acknowledge that people impacted by MS continue to have underlying disease activity even if they are in remission (i.e., have no physical symptoms) and in between relapses.  This underlying disease activity can lead to permanent damage in the brain, causing irreversible disability. Currently, MS patients only see their neurologist a few times a year so changes in disease progression often go unnoticed or unreported.

Canada has one of the highest rates of multiple sclerosis in the world, with an estimated one in every 385 Canadians living with the disease. And while the disease is widely recognized, there is still a lot about MS that is not well understood by both patients and the broader medical community. The most significant of these gaps in knowledge is how the disease progresses in each individual, regardless of their diagnosis.

That’s why Roche is working to help people and their doctors identify and track how the disease might be progressing. Patients, researchers and physicians today are increasingly using new technologies, such as mobile phones and wearable devices, like fitness trackers and smart watches, to measure their individual characteristics and to identify trends that may help them better understand their health and their body’s response to disease.

Leveraging the convenience and portability of smartphone technology, we developed FLOODLIGHT — a tool that measures a patient's ability to perform simple tasks on their smartphone — in partnership with the MS community, offering patients and neurologists a game-changing opportunity to better understand the disease. The app uses small tests and everyday behaviours to see what’s going on inside an MS patient's brain and central nervous system. These tests are designed to measure changes in a patient's mobility, as well as gross and fine motor function to help neurologists monitor disease progression in real time, with the goal of identifying treatment approaches that can help slow and hopefully prevent this progression. For example, one of the simple tasks is pinching tomatoes on-screen to measure fine-motor control such as gripping, grasping, and muscle weakness, as well as hand-eye coordination.

Another test uses the phone’s sensors to measure how someone performs a walking U-turn to detect unusual patterns in a person’s gait and balance by looking at things such as step counts, speed and asymmetry during U-turns. With daily information gathered from people around the world living with MS, physicians and scientists can begin to develop a clearer and more continuous picture of the reality patients face and ultimately improve care.

Canadian Research Collaboration

FLOODLIGHT is being used in clinical research studies around the world, including here in Canada. Through the Canadian Prospective Cohort Study to Understand Progression in MS (CanProCo) — a research partnership between us, the Multiple Sclerosis Society of Canada, and founding partners Brain Canada Foundation and Biogen Canada — we are hoping to better understand progression in MS and why some people progress in their disease while others do not.

Spanning multiple disciplines, this five-year project is a collaborative study aimed at pinpointing triggers leading to progression and establishing methods of managing them while measuring the impact of MS on individuals, as well as the Canadian healthcare system. The team of researchers, led by Dr. Oh will collect and analyze data from Canadians living with MS while accounting for biological, physical and socioeconomic factors, allowing for a holistic understanding of each person’s unique experience with the disease. In addition to a number of other research tools and methods, CanProCo will use FLOODLIGHT to help track symptoms of MS and disease progression over time.

“CanProCo is a pan-Canadian study that has been specifically designed to better understand neurological disease progression in MS, which occurs across the disease course of MS, and can greatly affect patient’s lives,” says Dr. Oh. “Data collected from FLOODLIGHT will be a valuable addition to the wealth of data being collected in CanProCo, because FLOODLIGHT will improve detecting and monitoring symptom progression in MS. Better tools to detect and monitor symptom progression is an essential step to better understand this phenomenon, which can then lead to strategies and treatments that can prevent neurological disability progression in MS.”

Using this data, researchers hope to better understand disease progression, improve long-term monitoring and potentially prevent the disease from manifesting. Long-term monitoring of MS progression also enables researchers to create a centralized and open source of data that may be relevant for other neurodegenerative diseases including Alzheimer's, Parkinson's, Amyotrophic Lateral Sclerosis, and Huntington's because of the potential for common disease mechanisms.

Recruitment for the cohort began March 2019 and is taking place at MS clinics at the following sites: University of Alberta, University of British Columbia, University of Calgary, University of Toronto and Centre Hospitalier de l'Université de Montréal.* For more information on how to participate, please visit the MS research portal.

Global Open-Source Research

There is also a public research program called FLOODLIGHT Open, that aims to improve the lives of people with MS and provide physicians and scientists with invaluable information. By joining, people may gain a better awareness of changes to their health, and help power a potential revolution when it comes to how we research and think about MS. FLOODLIGHT Open is available to everyone, not just people with MS, and participants will contribute to the development of a unique dataset designed to help move MS research forward.

Participants can choose to share information directly with their neurologist, giving them the ability to see both the significant and subtle symptomatic changes that occur between visits to paint a more accurate picture of each individual’s condition.

The data is anonymized and has open access — open for study participants, open for physicians and open for researchers to help create a better picture of MS and someday, better care. Our hope is that the data will shed light on the unseen signs of the disease and will help with the ultimate goal of creating practical tools to improve the lives of MS patients.

MS is an unpredictable and highly individual disease that can be hard to track or measure. While there is a lot about multiple sclerosis that is not yet understood, we are partnering with MS researchers and people living with MS to shine light on this condition and complete a more holistic picture with the hope to one day help improve care. As we see it, the more we know about each person’s individual journey, the more we may learn about MS.

April 9, 2019


Previous In Focus posts

1. The FLOODLIGHT platform has been developed for research purposes only. You should keep your doctor informed about any health changes as you normally would. Data and information provided on the FLOODLIGHT platform are not intended for use in the diagnosis of diseases or other conditions, or in the cure, mitigation, treatment or prevention of disease/conditions. Neither the app nor any other part of the platform is intended to provide support to clinical decision making, diagnostics, place a medical opinion or give any treatment recommendations.

2. Recruitment dates for each site will be posted on the MS Society of Canada’s social media channels as they become available.