about canios

 

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. CaNIOS has 41 registered clinical and research members, 2 associate members, and 4 rheumatology trainees in 21 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:  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.

Since these early days, CaNIOS has received funding for several landmark studies, a few still active today.  The network explored the genetic basis of the disease by confirming some of the suspected genes associated with lupus and by contributing to the worldwide effort to find more genes associated with this disease.  In parallel, investigators studied potential environmental factors that could trigger the disease in predisposed individuals.  Interesting biomarkers have been identified through several projects specifically looking at the kidney disease of lupus, the risk of blood clots in lupus and cardiovascular disease.

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 examining the regional variations in the course of lupus patients, with a focus on minorities.  A large study of Canadian with lupus provided a description of Canadians living with lupus and an original trial studied the impact of exercise and lifestyle modifications on the quality of life and evolution of consumers with lupus.

More recently, energy is invested by the investigators of the network to understand how fats in our blood could contribute to or protect against the complications of lupus and another project is identifying the barriers to health care and good quality of life patients with lupus experience with the idea to provide additional support in their community through a web-based lupus interactive navigator.

CaNIOS has received 18 peer-reviewed grants to date. Its members have published 85 journal articles, 127 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.

CaNIOS has matured over the past 17 years.  As new potential treatments are becoming available for consumers with lupus, it remains a challenge to understand this disease well and to diagnose appropriately and early those that would benefit from early and better treatments.

Executive Board until September 27, 2012:

The Chairman of the Board of Directors and President is currently Dr. Paul R. Fortin (Université Laval). 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, Dr. Joan Wither (University of Toronto, Toronto) is the Translational Research Director, and Dr. Douglas Smith (University of Ottawa, Toronto) is one of the Board of Directors.

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.

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 popular 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.

Investigators (Last updated: September 2012)