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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 SMILE study was funded by The Arthritis Society of Canada.
Given the low prevalence of lupus, conducting a randomized controlled
trial enrolling patients with this disease could not be done at a single centre. In order to reach the required sample
size to detect or reject 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 42 registered clinical and research members, 8 associate members,
and 3 rheumaology trainees in 20 adult, and 4 pediatric centres. Hundreds of patients are
actively participating in several CaNIOS initiatives. 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, and a study of the prevalence of malignancy in lupus. Neither
of these studies could have been performed without CaNIOS.
CaNIOS has received 14
peer-reviewed grants to date. Its members have published 56 journal articles, 105
abstracts, and one editorial. CaNIOS members also figure prominently in the revision
of the patient information book “Lupus: The disease of 1000 faces.”
CaNIOS is a public-private partnership, and receives peer-reviewed funding from the Canadian
Institutes of Health Research (CIHR) as well as funding from both private benefactors
and not-for-profit organizations. CaNIOS is aiming to expand its infrastructure,
while its members from different institutions strive to submit new grants 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. This simplified electronic data collection system will be applied to
new studies examiming the 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 (University of Toronto, Toronto).
The Vice-President is Dr. Janet Pope(Western Ontario, London). The Secretary is Dr. Christian Pineau
(Mc Gill University, Montreal), Dr Christine Peschken (University of Manitoba, Winnipeg) is the Treasurer and
Dr. Joan Wither (University of Toronto, Toronto) is the Translational Research Director.
CaNIOS counts six sub-committees, defined as a Executive Committee, Scientific & Data Access Committee,
Membership Committee, Advocacy and Knowledge Translation and Exchange Committee,
Authorship and Publication Committee, Fundraising Committee. These committees communicate via
conference calls regularly.
CaNIOS works via frequent conference calls and email, and through an annual scientific
and business meeting. The CaNIOS annual meeting provides an opportunity for lupus
researchers from across Canada to discuss research findings and plan future studies.
The CaNIOS annual meetings usually coincide with the Lupus Canada General
Assembly and Annual Patient Symposium, which promotes interaction between researchers
and patients with lupus.
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 severe 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.
Partners
American College of Rheumatology (ACR): http://www.rheumatology.org/
Canadian Arthritis Network (CAN): www.arthritisnetwork.ca
Canadian Rheumatology Association (CRA): http://www.rheum.ca/en/
Centre for Innovation in Complex Care (CICC): www.uhn.ca/cicc
Canadian Rheumatology Research Consortium (CRRC): www.rheumtrials.ca
Lupus Clinical Trials Consortium, Inc. (LCTC): http://www.lupusclinicaltrials.org
Lupus Canada and its provincial organizations: www.lupuscanada.org
Lupus Foundation of America (LFA): http://www.lupus.org/
The Arthritis Society (TAS): www.arthritis.ca
Conclusion:
CaNIOS is a unique organization 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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