Dr. Soania Mathur’s process of diagnosis was comparatively easy. She received a quick referral to a specialist and within 15 minutes of clinical assessment it was determined she had Parkinson’s.
Like everyone else, it wasn’t easy receiving the news. That diagnosis came 22 years ago when Soania was 28 years old, expecting her first child, and completing her residency in family medicine. As a physician, she understood what Parkinson’s was, but it was not a part of the plan.
Accepting her diagnosis took some time. She began treatment quickly and acknowledges that it took 12 years (all spent while operating her family practice) to realize that she couldn’t hide anymore.
Now, Soania is one of Canada’s leading patient advocates and is involved in several national and global initiatives. She continues to put her medical expertise to good use, with her blog Unshakeable MD and as an active member of the Parkinson’s advocacy and research communities. Recently, she co-authored a paper focused on an important priority tied to diagnosis: Digital Biomarkers. A digital biomarker is an objective, quantifiable measure of psychological and behavioural data that can be collected and measured through digital means (think wearables, implants, or ingestibles).
Today, we share an interview with her on this paper and the role of biomarkers in diagnosis and treatment.
Parkinson Canada: You recently published a paper on digital progression biomarkers. Can you tell us about this and why it is an important field of study?
Soania: The big issue in Parkinson’s is that there is no universal outcome measure for the detection of the disease or to monitor its progression.
More people are familiar with the impacts of clinical diagnosis than they are on clinical observation of progression, but it has the same limitations. Right now, it is hard to truly measure the onset, progression and severity of the disease or the long-term impacts of treatment.
A digital biomarker would provide a relatively cost effective and objective measure of how the disease is changing in someone. For example, if a wearable device tracked the frequency of someone’s tremor you could track even modest changes over time to see how things were changing.
For example, if someone visits their neurologist six or 12 months after an initial visit, their symptoms may not visibly progressed all that much. Even if there has been change, it is hard to objectively measure that change with the clinical scales we use. There is also a challenge because the person is only being observed in the moment – how you present at your appointment might be quite a bit different than how you typically feel, both because it is simply a moment in time and because the clinical setting is an artificial one. It is important to measure how patients feel in the “real world” – at home, at work, in social settings – to gauge how their disease truly impacts their quality of life.
If we can find an objective measure of change in Parkinson’s over time, people with Parkinson’s and their specialists can make better informed management decisions. This is particularly true when tied to symptom tracking and diaries.
There is an impact on research for treatment and therapies as well. Once again, it is difficult to measure small, incremental changes clinically. How many potential treatments have we abandoned because they haven’t met study outcomes based on poor measures? If someone is taking a particular drug or is involved in a trial, a digital marker could better track changes in response to that treatment and potentially reveal that a medication is having a greater impact than we realized.
Parkinson Canada: What are your thoughts or hopes for biomarkers more broadly?
Soania: I truly believe that once we find an accurate biomarker or set of biomarkers, measurements of disease that translate to clinical changes, it will change the face of clinical treatment and of research.
This goes hand-in-hand with what I’ve talked about above, but the field is broader than just digital markers. When we find a reliable biomarker for Parkinson’s, we can not only detect the disease but will also be able to follow treatments in trials much more accurately.
There is also an opportunity for better diagnosis. Right now, 80% of dopamine producing cells must die before you see motor symptoms. A biomarker could allow us to catch the disease in the premotor phase, which means that we could implement treatment and test therapies with an eye toward dropping or delaying motor symptoms. Currently, there are no disease modifying treatments but when they become available, early diagnosis will be vital. More than that, it resolves the wait. The stories you’ve seen elsewhere in this edition carry a great emotional burden of the unknown. Physically and emotionally, the sooner than we can receive a definitive diagnosis and begin treatment such as regular exercise, the better.
Parkinson Canada: Talk to us about issues around diagnosis generally. I know that we have had a discussion about the physical and emotional impacts of waiting for a diagnosis. What do you see or hear from others about these impacts?
Soania: In my case, I was fortunate. I was diagnosed with Young Onset Parkinson’s within 15 minutes of my first appointment, but I know that is an unusual story.
The emotional distress of waiting for a diagnosis, being misdiagnosed or being told there’s nothing wrong can be really damaging. People who are waiting for a diagnosis can feel they don’t belong to a medical group or community. They can feel lost and disempowered. Beyond that, there is the physical stuff. As soon as you are diagnosed you have options to begin treatment and you can also do things like start to exercise, manage your stress, proactively engage through advocacy, and/or joining a support group.
Parkinson Canada: What message do you have for others with Parkinson’s around their role in research?
Soania: When I used to give talks, people would ask, “are we near a cure?” and I would respond “they’re working on it.” That remains true, however, the reality is there is no real progress until we get involved. 85% of trails are delayed because of recruitment goals and 30% don’t get started at all. That is time we don’t have to waste.
I encourage everyone to get involved in whatever way makes sense to you: sign up as a participant, spread awareness of trials, or fundraise to support research. Our engagement matters.
I think it’s important that people understand how they can get involved. When you hear clinical trials, most people think major drug studies with significant risk. Those do exist, but some are just imaging. Some involve your time only and some are low barrier like blood tests. There is a clinical study that is suitable for everyone depending on their own preferences and limitations. They all count.
What I’d really like to say is that we need to “own our role” in the time horizon of research as Canadians with Parkinson’s. Without involvement of the patient community in research, better treatments and ultimately a cure, will not be found.