Canadian Lupus Registry

Dr. Christine A. Peschken, University of Manitoba, Winnipeg, Manitoba Chair, Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS)

This research network includes over 30 researchers and personnel involved in the research or its activities at Universities across Canada.

Lupus Canada has been an ongoing funder of the infrastructure requirements of a national Lupus Registry.  Patients from across Canada are invited to participate; their clinical information, such as their lupus features and treatment, is entered and tracked in a standardized fashion. The participating patients also provide standardized information about themselves and their lupus experience, including general health and well-being, and response to treatment. CaNIOS is a group of lupus researchers in Canada that collaborate nationally and internationally with each other and many other lupus researchers. Having such a Registry allows pooling of information, very important in a disease as variable as lupus. The Registry also participates in studies that include clinical trials of new treatments for lupus, and links to international lupus studies.

CaNIOS is currently participating in multiple projects. One is an analysis of patient reported outcomes, looking at predictive factors. The second, in the planning stages, is an in-depth analysis of lifetime treatment trajectories, responses and outcomes. An additional analysis is looking at comorbidities in Canadian lupus patients. Several CaNIOS centres are participating in the Lupus Clinical Investigators Network, which allows for participation in cutting edge trials of new treatments for lupus.

Registry data are also being used in two projects funded by the Canadian Institutes of Health Research. One is examining rates of hydroxychloroquine toxicity, and the impact of dose changes on disease flares, the other examining educational and employment outcomes in young adults with SLE.

Recent publications include:

• Predictors of unsuccessful hydroxychloroquine tapering and discontinuation: Can we personalize decision-making in systemic lupus treatment? https://onlinelibrary.wiley.com/doi/abs/10.1002/acr.24548
• The Challenges of Perceived Self-Management in Lupus. https://onlinelibrary.wiley.com/doi/10.1002/acr.24542
• Relationship Between Genetic Risk and Age of Diagnosis in Systemic Lupus Erythematosus. https://www.jrheum.org/content/early/2020/10/13/jrheum.200002