2024-10-05 00:15:50
The second Canadian symposium on long-term COVID-19 ended Friday in Edmonton, with a pressing call for the establishment of a national registry on the condition.
The event, organized by Long Covid Web, a network dedicated to research and support for people suffering from post-COVID-19 syndrome, in collaboration with the Universities of Alberta and Calgary as well as Alberta Health Services, was brought together researchers, clinicians and patients to address the challenges associated with this condition.
Speaker testimonies highlighted the devastating impact of long-term COVID-19 on patients’ daily lives.
Susie Goulding, founder of Long Haulers Support Group Canada, a support group for people affected by the condition, noted that persistent symptoms, such as chronic fatigue and brain fog, make daily tasks almost impossible.
These symptoms rob us of our identity and our ability to interact with others, she said.
Living with an invisible illness, often unknown in Canada, represents a real challenge.
A quote from Susie Goulding, founder of Long Haulers Support Group Canada
She also highlighted the weight of stigma that patients often feel, who struggle to obtain the necessary support. Lack of belief from family members, friends, doctors and the medical community […] causes considerable stress and affects the mental health of victims, she said.
A register for better understanding
Angela Chung, physician-scientist at the University of Toronto and leader of the Long COVID Web research network, recalled that long-term COVID affects approximately 3.5 million Canadians.
A figure that could be underestimated, particularly with regard to affected children because we do not know well the children who are affected by long-term COVID, underlines the expert.
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Angela Chung, physician-researcher at the University of Toronto, calls on the federal government to fund the creation of a registry on long-term COVID-19.
Photo : Radio-Canada / Caleb Perreaux
Gary Groot, a clinician-scientist at the University of Saskatchewan, co-leads the population health section of Long COVID Web.
According to him, without a registry, we will not be able to fully understand the magnitude and diverse impacts of this disease on different populations.
He points out that a national registry could help collect data on underrepresented groups, such as indigenous communities and immigrants, to tailor care.
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Gary Groot, a clinician-scientist at the University of Saskatchewan, says a national registry will help better document long-term COVID-19.
Photo : Radio-Canada / Caleb Perreaux
Although the registry itself does not lead directly to treatments, the expert specifies, it could facilitate patients’ access to clinical trials, thus making it possible to explore new therapeutic solutions.
Angela Chung calls on public authorities to provide financial support for the creation of this register. She specifies that the funds currently held by Long Covid Web are primarily directed towards clinical research.
We don’t have the resources to establish a registry per se, she says, adding that last year the network invested $2.1 million in long-term COVID research.
This year we will provide a similar amount, but to set up a registry, a partnership with the government is essential to ensure its coverage across Canada’s 13 provinces and territories.
Despite the challenges, significant progress has been made, underlines Angela Chung. She points to ongoing clinical trials that are exploring potential treatments based on mechanisms identified in long-term COVID-19 research.
We are beginning to reap the first fruits of our research network, she noted, highlighting the importance of interdisciplinary collaboration.
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