Expediting Therapies for ALS

Dr. Yana Yunusova envisions a clinical experience in which novel technologies support communication, engagement and meaningful interactions

KITE Research Institute Senior Scientist Dr. Yana Yunusova has a unique appreciation of time. “What’s my research lifespan versus somebody’s actual lifespan?” she asks herself. With such a stark perspective, Dr. Yunusova is driven to spend her time wisely. 

Dr. Yunusova is a Professor at the Department of Speech-Language Pathology at the University of Toronto. She specializes in neurodegenerative disorders affecting speech such as amyotrophic lateral sclerosis (ALS).

Time is precious for us all, but for people with ALS, time is priceless. The disease rapidly breaks down functions such as walking, speaking, and eventually breathing. According to Dr. Yunusova, people with ALS have an average lifespan of a mere two to five years. When ALS affects speech first, it’s closer to two. Dr. Yunusova wants that time to count as much as it can.  

ALS is a disease that disrupts nervous system connections between muscles and the brain. Dr. Yunusova explains that many people afflicted with ALS have difficulty controlling the muscles of the face, tongue, and larynx, which are all involved in speech. Her research program is currently dedicated to developing new technology-based assessments and treatments for people with these speech disorders.

Advancements in the realm of speech-language pathology over the past 18 years have been astounding, and Dr. Yunusova’s work has been an integral part of the progress. But it’s been a slow undertaking that only hindsight can illustrate. She reflects on the process, saying “Sometimes when you start something you think it’s only going to take a short time to arrive at this point, right? And then you realize you better wear your best boots because it’s going to take a very, very long walk to get there.”

Listening to the past

Dr. Yunusova earned her PhD in Speech Science in 2005. Back in the early 2000s, speech-language pathology researchers were focused on gaining knowledge and understanding of how we move the tongue, lips and jaw to produce speech and how various diseases affect these movements. Dr. Yunusova’s PhD dissertation was about understanding how patients with ALS and Parkinson’s disease articulate sounds. She and her colleagues’ work built an essential foundation of knowledge. From that foundation, she says that speech-language pathology researchers collectively transitioned to developing clinical applications of that knowledge.

Dr. Yunusova says that measurements of disease progression in motor speech disorders used to be entirely subjective, which by nature isn’t very accurate. But research efforts and technological progress have led to remarkable advancements in objective measurements. Now, sophisticated software and AI algorithms can listen to and observe a person speaking to measure their speech patterns and facial movements. 

“In the past, it was simply a perceptual evaluation,” Dr. Yunusova explains. “We used to use our listening or visual observation skill to assess an individual. Now we can use technology. Now we can say, ‘Ok, I’m going to listen to your speech and measure how long it takes or pauses that you take while speaking or what kinds of errors you make in speech.’ And now references are available for these kinds of objective measures and they're becoming more and more common practice.”

Dr. Yunusova sees incredible potential for applying new technologies to support both patients and clinicians, which she believes is her responsibility as a researcher. She wants to make the process as smooth, easy and productive as possible for people on both sides of the clinical coin. 

Those with neurodegenerative diseases suffer from the slow speed of assessment and diagnosis, especially compared to the rapid speed of disease progression. When ALS affects speech first, Dr. Yunusova says it takes twelve months on average to diagnose. The devastating speed of ALS and the slowness of diagnosis is difficult to reconcile. 

With the frustration of slow assessment and diagnosis, it’s a challenging process for clinicians as well. Dr. Yunusova talks about the importance of supporting them because of how difficult and exhausting clinical work is. “How we help clinicians make their lives easier is as important as how we help patients to live the best possible lives with the issues they're experiencing,” she says.

 

Speaking to the future

Automating the assessment process would be a time-saving leap forward for both patients and clinicians. Dr. Yunusova believes this modernization can also create space to reimagine clinical relationships. If assessment could occur outside the clinical office, a patient could bring automated assessment results to their clinician to interpret for a diagnosis. The relationship could transform from one bogged down by assessment to one centred on action and results. Together, the patient and clinician could develop disease management strategies and focus on improving the patient’s daily functioning. 

Dr. Yunusova envisions a clinical experience in which novel technologies support communication, engagement and meaningful interactions. She sees these technologies as tools to improve the experience, saying “Technology is the means to the goal – it’s not the goal itself. It’s about how we harness the technologies to make a change in how we support clinical practice, both for clinicians and their patients.”

With Dr. Yunusova’s vision for the future, the question becomes how to make it a reality. Automating the assessment process will require well-trained artificial intelligence systems. To build those systems, machine learning algorithms require very large and widely accessible databases of objective measurements. “That's why right now a lot of what we do is really in the research realm,” Dr. Yunusova says. “Because we're not quite yet at the point where a single lab could have access to databases of different speech disorders. Those databases have to be built on very similar types of tasks administered in very similar ways so that the algorithms can be well-trained.”

Once automated assessment systems are viable beyond research labs, Dr. Yunusova sees another barrier in proving their usability to clinicians. “The question is: are we ready to formulate the reasons that our technology is at such a level that clinicians would find it usable?” she asks. “Can it seamlessly interact with their existing clinical practices?” 

Arriving on time

Modernizing clinical practices as Dr. Yunusova envisions is an enormous task. She explains that clinicians need compelling reasons to adopt new approaches and that demonstrating those reasons will require more years of work and collaboration with research fields focused on usability and implementation. But she believes that with the progress that has already been made, it’s not a question of if but when this modernization will occur. 

During her research career, Dr. Yunusova says that speech-language pathology has gone from being overlooked by the medical field to being prominent in the conversation about the most important measures of neurodegenerative disease diagnosis and progression. The sensitivity of speech measurements is now recognized as similar to if not greater than other measures like walking or hand function. The efforts of Dr. Yunusova and her fellow researchers have put them on the map. Their next destination is in sight and only time will tell how they get there. 

Reimagining the clinical experience will take dedication, patience and perseverance. But Dr. Yunusova is hopeful. “The research may not be affecting individual people yet beyond their understanding and awareness of the importance of tracking speech, but we are getting there,” she says. “We're not quite there, but we will get there very soon, I believe.”