Spring 2019 (Volume 29, Number 1)
What is the Canadian Network for
Improved Outcomes in Systemic Lupus
By Christine Peschken, MD, MSc, FRCPC
The Canadian Network for Improved
Outcomes in Systemic Lupus Erythematosus
(CaNIOS) is a group of investigators
from across Canada who come together
to do lupus research. Not all members participate
in every project, and projects include collaborations
with international researchers or other
investigators outside the network.
The core of CaNIOS is our National Lupus Registry. With
generous support from Lupus Canada we have developed a
sophisticated, user friendly web-based platform, to replace
the earlier 1000 Faces platform. As of December 2018, the
registry included 650 lupus patients, and is growing rapidly.
More than one quarter of these patients are newly diagnosed
patients; these afford us the best opportunity for
long-term follow-up with high quality data. We have also
been working with an analyst to amalgamate the data from
the previous registry with the new CaNIOS registry. This
will increase the number of patients in the registry to more
than 2,000 with exciting new possibilities for answering
research questions. We review summary data at the annual
investigators meeting, which allows us to examine trends
in lupus manifestations, demographics and disease activity,
and generates new research questions.
We recently published a paper outlining longitudinal
disease activity in our CaNIOS lupus patients (“Persistent
Disease Activity Remains a Burden for Patients with Systemic
Lupus Erythematosus; Journal of Rheumatology 2018”).
In this paper we showed that even after many years of disease,
35% of lupus patients still had active lupus, and a very
high proportion of patients were taking glucocorticoids at
significant doses to maintain disease control. This highlights
the ongoing burden of lupus and the need for better
CaNIOS members are part of the MyLupusGuide, led
by Dr. Paul Fortin, a project developed to provide up-todate
information and access to appropriate resources for
persons with lupus and their healthcare providers. CaNIOS
sites were and are involved in the development and testing
of the application, and will be part of the disseminating
process as well. It is funded by the Canadian Institutes of
Health Research (CIHR) with support from Lupus Canada.
This project demonstrated the ability to reach
many patients through CaNIOS; more than
1,500 patients were approached through Ca-
NIOS investigators to participate in various
stages of the project. This project is set to launch
at the Lupus Canada Gala in May 2019 in Toronto.
CaNIOS sites are participating in Dr. Ann Clarke’s
economic analyses of the cost of systemic lupus erythematosus
(SLE). This project is a large international collaboration
to examine the cost of lost productivity in lupus patients.
Dr. Clarke’s healthcare utilization questionnaire is
now also included in the CaNIOS registry.
The CaNIOS registry data, both the old and the new
data sets, are being used to better understand the risk of
eye toxicity associated with hydroxychloroquine, and understand
the risks of lupus flare if hydroxychloroquine is
stopped. This information will then be linked to an ongoing
project to better understand patient preferences in decision-
making with respect to hydroxychloroquine. This project
is led by Drs. Sacha Bernatsky and Glen Hazelwood, and
is funded by the CIHR.
In summary, we have lots on the go, and welcome new
members and new sites!
Christine Peschken, MD, MSc, FRCPC
Associate Professor of Medicine,
Departments of Internal Medicine and
Community Health Sciences
Rady Faculty of Health Sciences
University of Manitoba