Novel research network to bring together expertise and experience to tackle long COVID

A new research network will see leading experts join forces with patients to explore the best ways to diagnose, assess, manage and treat long COVID, supported by a five-year, $20-million grant from the Canadian Institutes of Health Research Centre for Research on Pandemic Preparedness and Health Emergencies.

“CIHR and the federal government saw the need to have a co-ordinated approach to try to overcome this problem, learn as much as we can about it and come up with optimal ways to diagnose, treat and reduce the social burden of long COVID,” says Doug Gross, professor in the Faculty of Rehabilitation Medicine, co-principal applicant on the network grant and member of the network’s pan-Canadian steering committee.

According to recent data from StatsCan, nearly 15 per cent of Canadians reported having COVID symptoms lasting at least three months after they were first infected, and in July 2021, the Public Health Agency of Canada recognized “post COVID-19 condition” as a major public health burden.

The network, called Long COVID Web, is comprised of more than 250 participants across Canada, including 47 based in Alberta. In addition to scientists and clinicians, the network includes people who have lived experience with long COVID, Indigenous knowledge keepers, and policy and decision-makers.

“It’s not just going to be about collaboration, but also about driving our understanding of long COVID forward. Not just across basic science or epidemiology, but across all the main pillars of science,” says Piush Mandhane, associate professor in the Department of Pediatrics, co-principal applicant on the grant and member of the network’s executive committee.

Comprehensive approach
The network comprises four main teams — biomedical, clinical, health services research and population health — who will work together to tackle some of the key questions the network as a whole is hoping to address.

This comprehensive approach is needed given the challenges of studying long COVID, explains Mandhane.

“Long COVID presents really differently in different individuals. There was a recent paper that showed there are over 200 symptoms that can manifest for long COVID, and so there’s no one specialty that sees all the patients with long COVID.”

The members of each team will lean on their own expertise to guide the research in that area while also collaborating with others in the network.

“It’s a disease that crosses many specialties, many institutions, many groups, and it’s hard to co-ordinate that type of work. You need a network to co-ordinate that,” says Mandhane. “The only way forward is to work together.”

Patient perspectives vital
People who have lived experience with long COVID are an integral component of the network — in addition to choosing its name, they are playing a vital role in shaping its mission and vision.

“What we have learned from our patient partners who have long COVID is that we don’t necessarily have this system in place that really supports them fully. There are things that come up again and again, and it really reminds us how important it is that we begin to design a system, a treatment, that really is patient-centric,” says Chester Ho, professor and division director of the Department of Medicine, co-principal applicant on the grant and member of the network’s pan-Canadian steering committee. Ho is also the senior medical director for Alberta Health Services’ Neurosciences, Rehabilitation & Vision (NRV) Strategic Clinical Network, which spearheaded the province’s work with long COVID.

“Alberta has done a lot of work in this area,” says Ho. “It’s really great to be part of a network so we can synergize a bit more with the other provinces and also learn from them.”

The network will focus on answering three key patient-centred questions — how to diagnose and assess long COVID, how to manage and treat it, and how to provide accessible and equitable health and social services for those affected by long COVID.

All the participants involved will leverage existing networks and projects, bringing their collective expertise to the group. At the same time, the new network will provide a cohesive, co-ordinated national framework to help eliminate research duplication and knowledge gaps. They will also share their knowledge more widely, creating evidence-based guidelines and resources and spreading network findings through CanCOVID, one of Canada’s top knowledge dissemination digital platforms for COVID-19.

“This is our opportunity to have a more fulsome, a more comprehensive and a more holistic approach to address a very complicated issue,” says Ho.

“This network grant is kind of the tool or opportunity to co-ordinate all that work — the research, the changes in health-care services, the changes in social services — to help us all work together,” says Gross.

“[Long COVID] is a complex problem that’s going to require complex solutions, and we’re not going to be able to do it alone.”

Gross and Mandhane are both members of the Women and Children’s Health Research Institute and Ho is a member of the Neuroscience and Mental Health Institute.