Discoveries for life
The faces of health research 2026
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How one patient partner is turning his missed diagnosis into better outcomes for young people with arthritis
John Bang John was nine when his joint pain began. He was initially told it was Osgood-Schlatter disease—something temporary. But the pain persisted. At 14, he was finally diagnosed with severe enthesitis-related juvenile idiopathic arthritis and inflammatory bowel disease. Years of untreated inflammation had led to significant muscle atrophy and loss of mobility. “For a long time, my pain was invisible,” John says. “Being misdiagnosed meant losing years that could have changed my outcome.” Beyond physical limitations, John experienced missed school, social isolation, and mental health challenges that were not reflected in clinical measures. Today, he brings that perspective to the PAVE (Producing an arthritis value framework with economic evidence) project. As a youth research partner, John works alongside scientists to help ensure arthritis research reflects what young people actually experience—including delayed diagnosis, emotional impact, and long-term consequences. “Research needs to measure what truly matters to young people,” he says. “That’s how we prevent others from falling through the cracks.” |
Seeing the full picture: A parent partner is driving research that reflects the long-term impact of childhood arthritis
Lisa George Kylie was five when a minor fall led to months of swelling, stiffness, and unanswered questions. After six months of advocacy and repeated appointments, an MRI revealed significant inflammation, and she was diagnosed with juvenile idiopathic arthritis. Soon after, she also developed uveitis, inflammation in part of the eye, requiring frequent medicated eye drops during kindergarten. “Diagnosis was only the beginning,” Lisa says. “This wasn’t just about one joint. It was about vision risks, school supports, treatment burden, and what transition to adulthood might look like.” Through the PAVE (Producing an arthritis value framework with economic evidence) project, Lisa works with researchers to ensure studies reflect the full impact of childhood arthritis—including complications like uveitis, treatment side effects, family stress, and future uncertainty. “Research must look ahead,” she says. “Not just at today’s symptoms, but at long-term outcomes that shape a child’s entire life.” |
An interactive web-based tool to explore DNA and its links to health
Dr. Sarah Gagliano Taliun Dr. Daniel Taliun Genome-wide association studies look across all the DNA in a population to identify regions associated with a certain disease or trait, such as heart disease or cholesterol levels. The associations can differ by variables such as biological sex, so stratified association studies help researchers investigate those differences more closely. We are a wife and husband team leading this CIHR-funded research to develop PheWeb2, a web-based tool for interactive navigation and visualization across stratified results. In our Nature Genetics paper, we applied PheWeb2 to data from the Canadian Longitudinal Study on Aging, a large Canadian cohort, to highlight how our tool enables researchers to spot genetic effects that differ in women and men. Further reading |
Exploring How Weather-Related Poor Air Quality Impacts Health
Krishna Kolen, PhD Student Weather-related poor air quality from wildfires and dust storms is having adverse impacts on people living in Canada. Mistawasis Nêhiyawak, a First Nation community in central Saskatchewan, is experiencing these impacts firsthand. At their request, we have partnered with Mistawasis to explore what tools, strategies, and monitoring approaches can help to better understand and reduce health impacts. We will be working collaboratively with the Mistawasis Health and Lands Departments, Elders, and youth to understand who is impacted and how to raise awareness about poor air quality and associated health impacts. A key outcome of this research is to co-create strategies with data that are owned by the community and contribute to Indigenous data sovereignty, climate adaptation, and resilience. The outputs from this project can be used by Mistawasis leadership to inform context- and community-specific strategies to adapt to and mitigate impacts of poor air quality events. Further reading |
Anticoagulant clinical trial could change care for patients with blood clots
Dr. Lana Castellucci Venous thromboembolism (thrombosis) is a serious health concern involving blood clots in the veins of the legs. Affecting approximately 50,000 people each year in Canada, this condition can lead to complications such as pulmonary embolism, which is when blood clots travel to the lungs. Doctors often prescribe anticoagulants such as apixaban and rivaroxaban to treat blood clots, but a side effect is bruising or internal bleeding. A CIHR-funded clinical trial led by Dr. Lana Castellucci compared the bleeding risk of these medications when given to patients newly diagnosed with thrombosis. Involving 2,760 participants in 32 sites across Canada, Australia, and Ireland, the COBRRA study found that apixaban reduced bleeding by more than 50% compared to rivaroxaban. For people living with venous thromboembolism, this means fewer risks. "Patients with thrombosis often live with the dual fear of recurrence and bleeding, so knowing that a safer treatment option is available brings real peace of mind," says one trial participant. Dr. Castellucci's clinical trial began as a pilot study funded by CanVECTOR, a network that has advanced research on venous thromboembolism in Canada for a decade. The success of the pilot study led to the larger international clinical trial. Dr. Castellucci reflects that, by investing in CanVECTOR, CIHR "has helped build a community of researchers and patient partners who are working to make care safer and more effective—not just in Canada, but globally." Further reading |
Changing the game: Building safer sports for youth in Canada
Dr. Carolyn Emery, PhD, PT The benefits of sports are huge, but they come with risks too. In Canada, one in three youth aged 10 to 24 get hurt playing sports each year. These injuries can lead to reduced levels of physical activity, post-traumatic osteoarthritis, poor mental health, and prolonged concussion symptoms, among others. With CIHR funding, I lead SHRed Injuries, a Canadian community-based research program tackling risk factors and evaluating prevention strategies to reduce injuries and their consequences in youth sport. My research has reduced rates of injury in youth sports.
Further reading
X (Twitter): @CarolynAEmery |
Beyond the beat: When movement feels out of reach
Dr. Jennifer Reed Exercise is essential to improve heart health, but for people living with persistent and permanent atrial fibrillation, even simple movement can feel overwhelming. Fatigue, anxiety, and fear of complications often make it hard to know where to start. Dr. Jennifer Reed conducted a clinical trial with 86 patients with atrial fibrillation, comparing the effects of two different programs: High-Intensity Interval Training (HIIT)–short bursts of activities followed by rest–and continuous moderate-intensity exercises. Both training programs proved safe and improved life quality, fitness level, and heart health in patients with atrial fibrillation. Twenty-three minutes of HIIT twice a week offered similar benefits to one hour of continuous moderate-to-vigorous exercise twice a week. The results suggest that patients don’t need to follow a one-size-fits-all plan to improve their heart health. Cardiovascular rehabilitation and center-based exercise programs can offer patients the choice between these two approaches, helping them regain confidence and take control of their health. Further reading |
Genetic breakthrough RAPID GENE brings personalized heart treatment to the bedside
Dr. Derek So A heart stent procedure restores blood flow with a tiny tube inserted into an artery. Patients undergoing this procedure are often prescribed clopidogrel to prevent blood clots. However, the drug does not work for everyone. Genetic lab tests can identify who will benefit, but the results can take days or weeks. In emergencies, there's no time to wait. Giving the wrong medication can lead to serious complications. To solve this problem, Dr. Derek So partnered with Spartan Bioscience. Their RAPID GENE study resulted in a genetic test capable of providing life-saving results quickly. The test detects a genetic variation which prevents the body from properly metabolizing clopidogrel. This means that patients carrying this mutation will not respond to clopidogrel after a heart stent procedure, putting them at serious risk of developing blood clots. Dr. So's team found that the drug prasugrel was an effective alternative for these patients. The test is easy to use. "All genetic testing in the clinical trial was done by clinical nurses who had only a half-hour training session," explains Dr. So. With genetic results available at the bedside, "we are giving the right drug to the right patient, right away." Dr. So's team published their findings in 2012, sparking follow-up clinical trials such as RAPID STEMI and TAILOR-PCI, which influenced global adoption of genotype-guided therapy. Further reading
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Improving arthritis care in Indigenous communities
Dr. Cheryl Barnabe, MD, MSc, FRCPC Inflammatory arthritis, including conditions such as rheumatoid arthritis, disproportionately impact Indigenous communities in Canada because of limited access to high-quality health care services. To address these disparities, we are working closely with Indigenous communities and patients to create solutions that meet their needs. A key outcome of this joint effort is the 'Arthritis Liaison' program. This initiative embeds a trusted community member in the health care team to help patients navigate the system and achieve personal health goals. The program also builds a strong network for peer support within the community. As part of this program, we developed patient decision aids to facilitate shared decision-making between Indigenous patients and health care providers. These tools help Indigenous patients understand their arthritis treatment options, weighing risks and benefits of these treatments, and aligning treatment choices with their preferences, expectations, and values. Further reading |
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