Pictured from left: Evan Foster, Mitch Longval and Maria Williams.
CanStroke Recovery Trials is a platform to test, scale up and fast-track new ideas. Research leaders bring their expertise to advance the field and, at each of the eight sites, coordinators pull the pieces together to get the trials underway.
What does the job of a CanStroke Recovery Trials coordinator entail? They follow a rigorous approval process for safety and ethics at their sites. They stickhandle subsite and legal agreements. They help identify people to participate in trials (sometimes cold-calling patients to ask them to get involved). Coordinators ensure people get the necessary screening and assessments – bloodwork to measure electrolytes and platelet counts for safety; genetic tests to identify biomarkers; brain scans to characterize the location of the stroke and the size of the lesion; as well as heart monitoring, and cognitive and fitness testing. These days, coordinators also have to screen participants for Covid-19.
After the workup, each of the coordinators meet with supervising clinicians to determine an individual’s eligibility for trial participation. Through it all, there is constant communication between the coordinator and the participant. From the participant’s perspective, involvement in CanStroke Recovery Trials means special attention, extended access to post-stroke therapy, and the knowledge that their participation in research will improve recovery for others.
Evan Foster is the CanStroke Recovery Trials coordinator at Toronto Rehab/University Health Network. Foster, who is doing a Master’s degree at the University of Toronto in translational research, has been involved in CanStroke since the beginning – and even co-authored a poster for the 2019 Canadian Stroke Congress on the ‘trials and tribulations’ of setting up a clinical trials network in stroke recovery in Canada.
These days he is wrapping up the FLOW trial, which tests a combination of exercise and drug therapy to reopen the recovery window after stroke. He is also ramping up TRAIL, which delivers in-home virtual therapy to people with lower-limb impairment. And, he is working on Arm Boot Camp (ABC), a trial that focuses on delivering therapy to stroke-affected arms.
Foster says the best part about being a CanStroke Recovery Trials coordinator is building relationships, “being able to help somebody and being able to see their improvement after stroke.” After participating in one trial, many participants take a strong interest in research and subsequently enroll in other trials. The hardest part of the job of a coordinator is telling someone they don’t meet the criteria to take part in a trial.
Mitch Longval, CanStroke Recovery coordinator at Lawson Research Institute and St. Joseph’s Health Care in London, says he, too, enjoys “interacting with the participants and hearing about their experiences and how we can help them.” The job’s biggest challenge? “Trying to keep on top of all the moving parts of all the different trials.”
He sees a huge value in being part of a trials platform, where he can get support, advice and guidance from other coordinators and site leaders in the network. “The platform has been helpful in so many ways,” Longval says. “You always have help at your fingertips. Being able to run multi-centre studies would be such a huge task without a platform like this.”
Maria Williams, a physiotherapist with a research background, is CanStroke Recovery Trials coordinator at LA Miller Centre in St. John’s, NL. She disseminates information about the CanStroke studies, attends rounds on the stroke unit once a week to help identify people who could be candidates for trials, hands out information and answers questions. After developing an initial list of participants, Williams follows up in person or on the phone before starting the consent process and getting paperwork in place.
Because she’s a clinician, a typical day might involve doing a baseline assessment of a potential participant, conducting an exercise session with a study participant, dispensing and tracking medication, setting up follow-up sessions, and ordering assessments and bloodwork. “I like the variety. I have a lot of things coming at me every day and I like the challenge,” she says.
“People are quite pleased and excited to have CanStroke Recovery Trials available here in Newfoundland,” Williams explains. “I have one gentleman who moved from the other side of the island to participate in a trial.” Like the other coordinators, she feels grateful to be part of a platform that provides so much support to all sites across the country – from answering questions to data management to site monitoring. “You don’t feel like you’re on your own trying to figure things out.”
But her favourite part of the job is meeting the participants. “Every single individual and stroke is different.”