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Forum Recommendations Working Group (FRWG)

Dr.  Jane Aubin Dr.  Elizabeth Badley Dr.  Claire Bombardier  Dr.  Arthur Bookman Dr.  Judy Bray Dr.  Sarah Campillo Dr.  Jeff Dixon Dr.  Ciarán Duffy Dr.  Hani El-Gabalawy  Dr.  Brian Feldman Mr.  John Fleming Dr.  Cy Frank  Dr.  Robert Inman Dr.  Ed Keystone Ms. Cheryl Koehn  Dr.  Diane Lacaille Dr.  Tineke Meijers Dr.  Henri Ménard Dr.  Robin Poole Dr.  Kathy Siminovitch

University of Toronto University of Toronto University of Toronto University of Toronto CIHR Institute of Infection and Immunity Consumer representative University of Western Ontario McGill University University of Manitoba University of Toronto The Arthritis Society CIHR Institute of Musculoskeletal Health and Arthritis University of Toronto University of Toronto Consumer representative University of British Columbia Canadian Arthritis Network McGill University McGill University University of Toronto

Research Symposium on
Integrating Discovery Platforms in Autoimmune Diseases
December 4-5, 2003

Briefing Note

The purpose of the research symposium “Integrating Discovery Platforms in Autoimmune Diseases” was to develop a framework for a Canadian health research agenda in autoimmune diseases. Objectives were:

• to explore the current situation in autoimmune diseases, and in particular basic mechanisms leading to, and commonalities among, these diseases
• to identify strategic directions and potential research questions to be used, e.g., as the basis for CIHR and partner-sponsored RFA (Requests for Applications) and for integration of autoimmune diseases into the Canadian Lifelong Health Initiative
• to enhance collaboration and partnerships among stakeholders in the autoimmune diseases community

Symposium participants represented a broad cross section of experts working on the numerous autoimmune diseases, including biomedical researchers, clinical researchers, socio-behavioural researchers, health services researchers, physicians, policy makers, patient advocacy groups and non-government organizations.

This two-day event focused on developing a framework for a Canadian health research agenda based on (a) commonalities among different autoimmune diseases and (b) the application of existing and emerging technologies (such as genomics and proteomics) as platforms to translate research into the clinical environment. The first day included state of the art talks by national and international speakers on emerging science applied to autoimmune diseases such as bioinformatics, proteomics, genomics, health outcomes and longitudinal studies.

Day two was a consultation focused on the development of strategic research directions as part of a Canadian national research agenda for autoimmune diseases. Participants came to agreement on nine strategic research directions which are listed below in an order that reflects participants’ areas of interest and their enthusiasm in relation to the importance of these directions.

1. Biomarkers
2. Immunopathogenesis
3. Functional Genomics
4. Microbial Autoimmunopathogenesis
5. Biometrics
6. Tissue Regeneration and Repair
7. Cohort Methodologies
8. Methods for Early Case Findings
9. Clinical Trials.

After identifying the above areas, participants selected one of these areas to explore further in a small group discussion. Group members developed a report that described the strategic research direction, provided examples of new research questions and suggested supports required to enable implementation of the research direction.

While discussing strategic research directions, participants also identified the following area for cross-CIHR Institute Collaboration: “development of new animal models for identification of early markers to validate genetic discoveries across a variety of diseases”.

In closing the symposium, Dr. Bhagirath Singh, Scientific Director, Institute of Infection and Immunity confirmed the cross-cutting nature of autoimmunity diseases and the need to have voluntary health organizations (VHO) involved in the development and implementation of research frameworks. Dr. Singh also commented on the importance of a) involving researchers across the four CIHR pillars and b) following through on new relationships developed at this session. Next steps included:

• Sharing the results of the workshop with the Institute Advisory Board
• Collaboration with other CIHR Institutes and VHO as partners in following through on the results of this symposium.
• Further discussions with the NIH to follow through on suggestions made regarding possible long-term infrastructure partnerships.

The Alliance for a Canadian Arthritis Program

The Alliance for a Canadian Arthritis Program (ACAP)¹ is a strategic alliance of the key arthritis stakeholders in Canada.  The purpose of ACAP is to focus collective resources on common goals:  to increase funding for research, improve access to care, and education for people with arthritis.  As part of this commitment, one of the first research initiatives is “Frontiers in Inflammatory Joint Diseases” (FIJD), a national, three-day forum focused on education and research hosted by The Arthritis Society, CIHR Institute of Musculoskeletal Health and Arthritis and the Canadian Arthritis Network. A key outcome for this three-day Forum is to enhance linkages and interactions among participants, e.g., consumers, policy makers, public agencies, national and international researchers and industry. 

¹ ACAP includes the Canadian Arthritis Network (CAN), The Arthritis Society (TAS), the CIHR Institute of Musculoskeletal Health and Arthritis (IMHA), Canadian Arthritis Patient Alliance (CAPA), Canadian Rheumatology Association (CRA), the Canadian Orthopaedic Association ( COA), the Cochrane Collaboration (CC-MSG), Allied Health Professionals Association (AHPA),  the Pediatric Rheumatology Association (PRA) and Arthritis Consumer Experts (ACE).  The FIJD Research Forum is the first research initiative of ACAP.

Alliance Chart 

Name: Arthritis Health Professionals Association  
Acronym: AHPA
Level:  National

393 University Avenue
Suite 1700      
Toronto, ON M5G 1E6

Telephone:  416-979-7228 ext. 321    
Fax:   416-979-8366      
Web site: ahpa@arthritis.ca                

The Arthritis Health Professionals Association (AHPA) is a society of health professionals who work in the field of rheumatology. Its members come from a variety of clinical and administrative settings, such as hospitals, clinics, community programs and universities. They are dedicated to improving health care standards for people with rheumatic diseases through the promotion of education and support of research among its members.

Our Mission

• Stimulate interest in rheumatology among health professionals
• Promote research and education in the field of rheumatology
• Encourage interdisciplinary communication
• Act as a resource body for those with an interest in rheumatology
• Promote public awareness of the needs of people with arthritis.

Name: Canadian Arthritis Network
Acronym: CAN
Level:  National
Funding: Federal Gov’t
Date Est.: 1997

250 Dundas Street West, Suite 402
Toronto, ON M5T 2Z5     

Telephone: 416- 586-4770    
Fax:  416-586-8395    
Web site: can@arthritisnetwork.ca 
         
The Canadian Arthritis Network (CAN) provides innovative solutions to arthritis issues through research and partnership.  CAN’s mission is: 

• To become a world leader in: developing information and knowledge as well as new diagnostic and therapeutic technologies for arthritis
• Provide innovative, knowledge-based services in partnerships with industry and government, and
• Enhance the quality of life of people with arthritis. 

To achieve his, CAN provides services and access to the academic expertise of over 130 of Canada’s leading arthritis researchers and clinicians, for industry, government and academics, involved in arthritis.  The Network is part of the Networks for Centres of Excellence, Canada’s flagship science and technology program.

Collaborations: The Arthritis Society, Canadian Institutes of Health Research, Institute of Musculoskeletal Health and Arthritis, clinical and academic partners.

Name: Canadian Arthritis Patient Alliance
Acronym: CAPA
Level:  National
Funding: The Arthritis Society

Telephone: 1-800-321-1433    
Web site: www.arthritis.ca                

The Canadian Arthritis Patient Alliance (CAPA) is a national organization of volunteers.  All of the members have arthritis, but there are also associate members from across Canada and around the world and most of these do not have arthritis.  The single thing that unites members and associate members is that we want to 'make a difference' in the fight against arthritis.  The CAPA creates links between Canadians with arthritis assisting them to become more effective advocates.  CAPA seeks to improve the quality of life of all people living with arthritis and supports individual members and groups in implementing advocacy activities, including the continuing education of advocates.

Name: The Canadian Orthopaedic Association
Acronym: COA
Level:  National

1440 St. Catherine Street West, Suite 718
Montreal, PQ H3G 1R8      

Telephone:  514-874-9003      
Fax:   514-874-0464     
Web site: www.coa.aco.org                  

In October 1943, the members of the Montreal Orthopaedic Association decided to form a national association.  The first Scientific Meeting of the bilingual Canadian Orthopaedic Association (COA) was held in Montreal in June 1945.  Orthopaedic education was deemed a priority and training programs were started in Montreal, Toronto and Vancouver. 

The vision of the COA is to achieve excellence in orthopaedic care for Canadians.  Accordingly, the goals are to provide Canada with outstanding and committed surgeons, and ensure that adequate and accessible resources are available for Canadians. 
The objectives to assist in achieving the goals of the COA are:

• To advance professional fulfillment
• To promote and provide education for members
• To communicate and inform, and
• To advocate for national standards. 

Since its inception, the COA has enjoyed an international reputation.  Liaison officers are appointed to participate in and maintain an affiliation with national and worldwide orthopaedic institutions.

Name: Canadian Rheumatology Association
Acronym: CRA
Level:  National

43 Lundys Lane
Newmarket, ON L3Y 3R7   

Telephone:  905-952-0698      
Fax:   905-952-0708

The mission of the Canadian Rheumatology Association (CRA) is to represent Canadian Rheumatologists and promote their pursuit of excellence in Arthritis Care and Research in Canada through leadership, education and communication.
The Pediatric Rheumatology Association contributes the expertise of specialists in child and youth rheumatology to the CRA.

Name: CIHR Institute of Musculoskeletal Health and Arthritis
Acronym: IMHA
Dr. Cyril Frank, Scientific Director
Level:  National
Funding: Federal Gov’t 

Telephone: 403-220-3521    
Fax:  403-210-8149     
Web site: www.cihr-irsc.gc.ca                

The CIHR Institute of Musculoskeletal Health and Arthritis’s mandate is to advance the science of arthritis, rehabilitation, bone, muscle, skin and oral health. Strategic research priorities include:

• Physical activity, mobility and health
• Tissue injury, repair and replacement, and
• Pain, disability and chronic disease. 

The Institute has a Scientific Director appointed by CIHR and an Institute Advisory Board comprised of 16 members with expertise in the area.

Name: The Cochrane Collaboration
Acronym: CC-MSG
Level:  International
Date Est.: 1992

Canadian Cochrane Centre
McMaster University   
1200 Main Street West
Hamilton, ON L8N 3Z5     

Telephone:  905-525-9170 x 22487    
Fax:   905-577-0017    
Web site: http://Cochrane.mcmaster.ca              

The Cochrane Collaboration is an international non-profit and independent organization, dedicated to making up-to-date, accurate information about the effects of healthcare readily available worldwide. It produces and disseminates systematic reviews of healthcare interventions and promotes the search for evidence in the form of clinical trials and other studies of interventions. The Cochrane Collaboration was founded in 1993 and named for the British epidemiologist, Archie Cochrane.

The major product of the Collaboration is the Cochrane Database of Systematic Reviews, which is published quarterly as part of The Cochrane Library.  Those who prepare the reviews are mostly health care professionals who volunteer to work in one of the many Collaborative Review Groups, with editorial teams overseeing the preparation and maintenance of the reviews, as well as application of the rigorous quality standards for which Cochrane Reviews have become known. The activities of the Collaboration are directed by an elected Steering Group and are supported by staff in Cochrane Entities (Centres, Review Groups, Methods Groups, Fields/Networks) around the world.

The Cochrane Collaboration has evolved rapidly since it was inaugurated at the 1st Colloquium, but its basic objectives and principles have remained the same as they were at its inception. It is an international organization that aims to help people make well-informed decisions about health care by preparing, maintaining and ensuring the accessibility of systematic reviews of the effects of health care interventions. The Collaboration is built on ten principles:

• Collaboration, building on the enthusiasm of individuals
• Avoiding duplication
• Minimizing bias
• Keeping up to date
• Striving for relevance
• Promoting access
• Ensuring quality
• Continuity, and
• Enabling wide participation.

Name: The Arthritis Society
Acronym: TAS
Level:  National
Funding: Voluntary Donations

393 University Avenue, Suite 1700
Toronto, ON M5C 1E6     

Telephone: 416- 979-7228    
Fax:  416-979-8366     
Web site: www.arthritis.ca                

With its network of dedicated volunteers and health care professionals, The Arthritis Society pursues its mission to help people with arthritis by:

• Promoting, evaluating and funding research in the areas of causes, prevention, treatment and cures of arthritis
• Providing information, effective emotional and practical support to people with arthritis and those near them
• Increasing awareness among the public about arthritis and The Arthritis Society
• Advocating the interests of people affected by arthritis and assisting them to advocate directly for high quality care
• Promoting education programs for physicians and other health professionals
• Seeking funds from the public to support our programs and services
• Ensuring that all Society programs and activities are conducted in the most cost-effective manner possible through a process of regular review.

Key Planning Terms

Strategic Research Themes

For the purposes of this Forum, strategic research themes are research areas or applications that are central to the reduction of the impact of inflammatory joint diseases in Canada. 

Research themes tend to cross disciplines, determinants of health and CIHR research pillars.  They may vary in scope but should be focused enough to enable the identification of appropriate approaches or methodologies.  Research themes constitute a major area of responsibility and commitment over the next 5 – 10 years.  They provide a realistic stretch for research frontiers in inflammatory joint diseases.

Criteria for Strategic Research Themes:

• are based on pressing issues and challenges
• address population or public health significance, i.e., burden of disease
• have potential for high impact:  greatest possible health benefit for Canadians
• address stakeholder needs and expectations
• build on Canada’s special strengths in a unique Canadian niche
• support opportunities for international partnerships
• contribute to an innovative, “frontiers” agenda

Potential Research Questions

These are examples of research questions that could fit into a research theme.  They give an indication of the scope of the research theme and help define how the theme could contribute to the health of Canadians in the area of inflammatory joint disease. 

• What research questions are you aware of that are being investigated in this strategic research theme?
• What new research questions could provide significant value in this area? 

CIHR Research Pillars/Themes
 Which research pillars are relevant to this research theme? 

• Basic biomedical, e.g., genetic, molecular, cellular, tissue physiology
• Applied clinical, e.g., drugs, devices
• Health systems, health services, e.g., quality of care, cost-effectiveness
• Societal, cultural and environmental influences on health and the health of populations.

Determinants of Health
 Which of the following determinants of health are closely linked to this research theme? 

• Biology and genetic endowment
• Culture
• Education
• Employment and working conditions
• Gender
• Health behaviors and practices, coping skills
• Healthy child development
• Access to health services
• Income and social status
• Physical and social environments (e.g., home/family, workplace, recreation)
• Social support networks.

Click here to view the Key Determinants of Health