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Mission Statement:
“A group of Canadian investigators coming together to improve the outcome
of lupus patients across our country through collaborative research.”
Goals:
- To facilitate the care of Canadian lupus patients.
- To improve the outcomes in Canadian lupus patients.
- To describe the lupus patient population in Canada.
- To facilitate research in lupus and related autoimmune diseases.
- To provide a large patient base to address clinically important issues through research.
- To take advantage of the unique features in the Canadian lupus population.
- To look at sub-groups of the Canadian lupus population: the pediatric lupus patients,
minorities, and men.
- To contribute to the global and international effort on lupus research through the
uniqueness of the Canadian lupus population.
- To provide mentorship to young investigators and trainees who are interested in
developing a career in lupus research.
Background History:
CaNIOS became a non-share capital corporation in April 2009. CaNIOS was created in 1995 with the specific goal of running
a multi-centre, randomized, controlled Study of Methotrexate in Lupus Erythematosus
(SMILE). The so-called SMILE study was funded by The Arthritis Society of Canada.
Because of the low prevalence of lupus, the conduct of such a randomized controlled
trial could not be done at a single centre. In order to obtain the required sample
size to detect clinically important differences between treatment groups, a Canada-wide
collaboration was developed through the leadership of Dr. Paul R. Fortin.
CaNIOS
brought together many lupus experts who, despite their limited individual lupus
cohorts, were able to pool information for the completion of the SMILE study. Since
its inception, CaNIOS has had up to a total of 50 clinicians affiliated with 15
Canadian academic-based rheumatic disease units, five community rheumatologists,
and hundreds of patients participating simultaneously in the research effort. In
addition to their work on SMILE, the CaNIOS investigators and their cohorts have
proved a very useful tool for the conduct of other lupus research in the country.
Two subsequent studies were funded relatively quickly after the creation of CaNIOS.
They include a large randomized, controlled trial of a group support therapy in
lupus erythematosus, and a study of the prevalence of malignancy in lupus. Neither
of these studies could have been performed without CaNIOS.
CaNIOS has received 13
peer-reviewed grants to date. Its members have published 42 journal articles, 67
abstracts, and one editorial. CaNIOS members also figure prominently in the revision
of the patient information book “Lupus: The disease of 1000 faces.”
Until now, CaNIOS
has been supported solely by funding from individual operating grants. The network
exists through limited peer-reviewed funding. In September 2001, a donor, in partnership
with Lupus Canada, provided for funding of the position of a National Scientific
and Development Coordinator for three years and renewed for an additional three
years. CaNIOS is aiming to expand its infrastructure, since no less than 15 investigator-driven
projects are being considered by the collective. At this point, several of these
projects have been written up and submitted to peer-reviewed funding agencies. These
grants would cover the direct cost of performing investigator-driven research studies.
However, the overall cost of maintaining an infrastructure such as that required
by CaNIOS exceeds what can be obtained through peer-reviewed funding.
In order to
achieve its goals, CaNIOS has developed a standardized data collection system for
patients in Canada. The over-arching question will be the study of regional variations
in the course of lupus patients, with a focus on minorities.
Executive Board:
The
Chairman of the Board of Directors and President is currently Dr. Paul R. Fortin (Toronto). The Vice-President is Dr. Janet Pope
(London). The Secretary is Dr. Christian Pineau (Montreal), Dr Christine Peschken (Winnipeg) is the Treasurer and Dr. Joan Wither (Toronto) is the Translational Research Director.
Six sub-committees, defined as a Executive
Committee, Scientific Committee, a Membership Committee, a Data Access Committee,
a Data Standardize Committee and a Privacy Compliance Committee. These committees
meet via conference calls regularly.
CaNIOS functions through conference calls and
through an annual scientific meeting that takes place at the same time as its business
meeting. The CaNIOS annual meetings coincides with the Lupus Canada General Assembly
and Annual Patient Symposium.
Relevance of Future CaNIOS Research to Patients:
CaNIOS
is a unique collaboration that will allow Canadian researchers to address several
questions important to persons with lupus, and to their families: Why are autoimmune
diseases more frequent in some families? What are the roles of gender, the environment
and genetic factors in the development of lupus? Why are cardiovascular diseases
more frequent in lupus? Can we prevent heart attacks and strokes in lupus patients?
How can we understand better neuropsychiatric lupus manifestations? What happens
to children with lupus? Why are the people of some Canadian First Nations more prone
to lupus? These and other questions are on the “to do” list of CaNIOS investigators.
Furthermore, CaNIOS can bring to Canadian patients new experimental treatments developed
in other countries, and can study their risks and benefits in a Canadian environment.
However, these goals can only be achieved if strong support to research is provided
by lupus patients across Canada, and if a large number of patients participate in
CaNIOS research projects.
Conclusion:
CaNIOS is a unique tool for the Canadian lupus
community, since it brings together widespread scientific and clinical expertise
in a coordinated and collaborative spirit for the benefit of all persons with lupus.
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