U of T experts, including IHPME’s Beate Sander, help lead new pan-Canadian Lyme Disease Research Network

Today, Federal Minister of Health Ginette Petitpas Taylor announced a $4 million investment in the first-ever Pan-Canadian Lyme Disease Research Network (CLyDRN) that will bring together researchers from over 40 universities across the country, as well as patients, public health experts and representatives from communities living with Lyme disease. The aim of this vast multi-disciplinary network will be to improve health outcomes for Canadians with Lyme disease, and address the gaps in prevention, treatment and diagnosis of this tick-borne infection.

Lyme disease is caused by the bacteria Borrelia burgdorferi and is transmitted to humans via the bite of an infected blacklegged tick. A warming climate has coincided with the spread of this insect population across the country and has led to an increase in the incidence rate of infections.

“One of the major challenges with Lyme disease is that it presents with unspecific symptoms making it difficult to recognize as a possible cause of Lyme disease. Further, diagnostic tests for Lyme disease may not detect early stages of infection. As a result, diagnosis and treatment of Lyme disease may be delayed,” said Beate Sander, Co-Scientific Director of CLyDRN and an associate professor at U of T’s Institute of Health Policy, Management and Evaluation in the Dalla Lana School of Public Health.

She and U of T Medicine’s Samir Patel will co-lead the network and provide scientific oversight and direction, along with principal investigator Dr. Kieran Moore of Queen’s University.

In recent years, advocacy groups have expressed their concern about the lack of information available for patients who feel unwell or have symptoms of Lyme disease but continually test negative. This lack of knowledge and the public health risk associated with the disease has prompted the federal government to develop a framework of which the CLyDRN is a part, and has outlined four key areas of focus; diagnostics, prevention and risk reduction, clinical science and health services research, and patient & community engagement, training and knowledge translation.

“With the increasing number of cases reported each year, we must not underestimate the public health impact of Lyme disease in Canada,” said Dr. Theresa Tam, Canada’s Chief Public Health Officer. “The establishment of a Pan-Canadian Research Network on Lyme Disease, and projects funded under the Infectious Diseases and Climate Change Fund, will help advance the science of this disease and support the development of new tools, information and resources to help Canadians and communities make informed decisions about their health.”

In addition to her role as Co-Scientific Director of CLyDRN, U of T’s Beate Sander will co-lead the clinical science and health services research pillar along with Dalhousie University’s Shelley McNeil and Todd Hatchette. Their prime focus will be to use data from the patient cohorts and health administrative data to learn about the disease trajectory.

“The patient cohort and bio bank are the foundational pieces for the research network, and will help improve diagnostics, prevention and treatment strategies by identifying things like risk factors for contracting or developing complications from Lyme disease,” explained Sander.

A self-registry of patient cohorts will also be made available for those who have persistent symptoms of Lyme disease, but who may not have received a positive diagnosis.

“It is important for us to include all patients in our cohort as we try to quantify the health and economic burden of disease for Lyme disease patients,” added Sander.

Determining the burden of disease and the impact of its clinical management such as diagnosis and treatment, will also help inform future targeted intervention strategies.

“It is important for the public health of all Canadians that we continue to address the growing threat from tick-borne diseases like Lyme disease and find preventative measures to improve health outcomes. I am pleased to see there has been a major investment in this area,” said Adalsteinn Brown, Dean of the Dalla Lana School of Public Health.

This investment, through the Canadian Institutes of Health Research and the Public Health Agency of Canada, is part of Budget 2017’s commitment to support the Pan-Canadian Framework on Clean Growth and Climate Change.