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Editorial
The "New" International League of Associations for Rheumatology
JOHANNES J. RASKER, MD,
HISTORY The International League of Associations for Rheumatology (ILAR) is the umbrella organization for rheumatology, representing all regions in the world. ILAR was founded in 1927 and its first offspring was PANLAR (the Pan American League) founded in 1944, followed by EULAR (the European League) in 1947, APLAR (the Asia Pacific League) in 1963, and AFLAR (the African League) in 19891-4. ILAR has held meetings every 4 years, and these have rotated around the regional leagues, the 21st and last being held in Edmonton in 2001. The Presidency has also rotated between the regional leagues. RELATIONS WITH WHO, ILAR COMMITTEES, AND TASK FORCES Among the most important of ILAR's activities are those it undertakes with the World Health Organization (WHO). Direct links were first established in 1950 when ILAR was recognized as the official nongovernmental organization to advise WHO on rheumatologic problems. In the early years, control of rheumatic fever was emphasized, but since World Rheumatism Year in 1977, an initiative of ILAR and WHO, the great diversity of rheumatic diseases has been acknowledged5,6. WHO's request for data on the prevalence of rheumatic complaints and disability from rural communities in developing countries became one of the League's top priorities. The lack of strategies against the heavy burden of pain, disability, and diminished productivity due to these diseases was also noted. In 1981, during a WHO/ILAR meeting in Geneva, the "Community Oriented Program for the Control of Rheumatic Diseases" (COPCORD) was started by, and remains under the umbrella of, the ILAR Standing Committee on Epidemiology. Ken Muirden was WHO-ILAR COPCORD Coordinator from 1985 to 2001, followed by John Darmawan7,8. COPCORD continues to play a crucial role in collecting data on rheumatic complaints and disability, especially in rural areas in developing countries, and has investigated important questions of who manages rheumatic complaints and whether it is effective9. Studies were performed in many countries, including India, Indonesia, Thailand, Vietnam, Bangladesh, China, Brazil, Chile, Mexico, Cuba, Pakistan, Kuwait, Philippines, Malaysia, Australia, and Egypt. COPCORD studies in Asia have shown that musculoskeletal problems are as frequent in developing as in developed countries. These studies are of paramount importance to present data for the Burden of Disease WHO record (WHO Scientific group)10. Because of the aging of the population in many developing countries, musculoskeletal diseases are becoming a major burden8. A comprehensive list of all the published studies can be obtained from the ILAR Secretariat (see below). OMERACT, the ILAR task force on Outcome Measures for Arthritis Clinical Trials, created under the guidance of the ILAR Standing Committees of Clinical Studies and Epidemiology, has been very active and productive. This group brought together clinicians, epidemiologists, representatives of the pharmaceutical industry, and governmental registration organizations from all over the world for productive discussion. International consensus conferences have been organized on a 2-yearly basis since the first meeting in Maastricht in 199211. Results are published and submitted for ratification as WHO/ILAR criteria12. Positive interactions have also been achieved on the issue of drug safety, with involvement of regulatory authorities like the WHO and the US Food and Drug Administration and its European equivalents. Importantly, guidelines for health economic studies have recently been agreed on (available from http://www.omeract.org). The 1998 meeting in Cancun, Mexico, for example, covered outcome measures for systemic lupus erythematosus, ankylosing spondylitis, and osteoarthritis13; the 2000 meeting in Toulouse, France, dealt with minimum clinically important differences in radiological outcomes and imaging, as well as discussion on economics and safety of drugs; and the 2004 meeting in Monterey, USA, dealt among others things with psoriatic arthritis14. TASK FORCES, COMMITTEES, AND OTHER ACTIVITIES Here follow only a few examples of other activities of ILAR: A WHO/ILAR subcommittee under Dr. W. Felts has produced an internal classification of diseases for rheumatology and orthopedics, used as the basis for Chapter 13 of the Tenth International Classification of Diseases (ICD-10). The ILAR Standing Committee on Clinical Studies has undertaken a number of collaborative activities; for example, in 1991, the 4th WHO/ILAR Task Force meeting focused on pharmacoepidemiology, and guidelines were set up for use and testing of antirheumatic drugs. Other WHO/ILAR efforts involve the Task Force on Impaired Quality of Life from Rheumatic Diseases, which held its first meeting in 1996, in Leon, Mexico; the ILAR Task Force on Reactive Arthritis, which convened in the Magreb countries of Northern Africa; the Task Force on Classification Criteria for Juvenile Idiopathic Arthritis15,16; and the Task Force on Impaired Quality of Life, with successful meetings in 199617,18 that included quality of life measurement in osteoporosis and fractures. The ILAR minimum standards for training of rheumatologic arthroscopy, which will increase the quality of arthroscopy, were ratified at the ILAR executive meeting in Beijing, China, thanks to the preparation of an ILAR working group. The document is also available online at http://www.ILAR.org. ILAR FELLOWSHIPS IN CLINICAL EPIDEMIOLOGY OF THE RHEUMATIC DISEASES Young rheumatologists from developing countries receive training in techniques of epidemiology thanks to ILAR fellowships that have been set up in several countries including Canada, the UK, and Australia. Fellowships include up to US$15,000 matching funds from regional league, host country, host university, or other source. Over the last decennium, for example, students from Chile, Tunis, Kenya, Bulgaria, Peru, and Zambia were granted scholarships. A database of educational materials was compiled by Rodney Grahame and David Barraclough, chairs of the ILAR Standing Committee of Education; and a manual, "Aches and Pains," written with Janie Hampton has now been translated into 15 languages4. During the presidency of Jan Dequeker (1997-2001) ILAR sought support from the WHO for the ILAR-UMER (Undergraduate Medical Education in Rheumatology) project, to ensure that rheumatology is integrated as part of medical and health professional undergraduate curricula all over the world19-21. These "ILAR-UMER 2000" plans were embraced by the American College of Rheumatology (ACR), the Allied Health Professionals in Rheumatology (AHPR), and the Bone and Joint Decade. EXTERNAL COMMUNICATIONS In 1997 the ILAR website http://www.ilar.org was set up as an objective, non-drug sponsored source of information for rheumatologists, allied health professionals, medical students, and the general public22,23. ILAR JOURNAL In 2004, under editor Jan Dequeker, Clinical Rheumatology became the official journal of ILAR. The presidents of the regional leagues are members of the journal's editorial board, and the editor is also a member of the ILAR executive24. With Dr. Dequeker's recent retirement, Paul Davis has assumed the duties of editor. Other publications of the organization include the ILAR News Bulletin, which was sent to the executive and others between 1997 and 2001, and again since 2004 as a quarterly newsletter distributed by E-mail. ILAR is an open organization and the bulletins are freely available for anyone interested. The OMERACT meetings and other ILAR endorsed meetings resulted in many publications and supplements25,26. ARI AND THE BONE AND JOINT DECADE Contacts were made with ARI (Arthritis and Rheumatism International, a world organization of arthritis foundations, social leagues/patient groups), resulting in closer cooperation; since 1998 the president of ARI is chairman of the ILAR Standing Committee of Social Agencies. ILAR participated at the April 1998 founding conference of the Bone and Joint Decade in Lund, Sweden. As a result there has been good cooperation between ILAR and the Decade, including adoption by the Decade of ILAR's Undergraduate Education in Rheumatology (UMER-2000) program6,19,20,21. Tony Woolf joined the ILAR Executive as official representative for the Bone and Joint Decade. WORLD ARTHRITIS DAY In 2000, together with ARI and the Bone and Joint Decade, ILAR declared October 12 World Arthritis Day with the following aims: to raise awareness of the growing burden of arthritis, to improve the quality of life of arthritis sufferers, to support research on the causes and treatment of arthritis, to promote cost-effective prevention and treatment of arthritis, and to educate physicians and health professionals about arthritis. HEALTH PROFESSIONALS The ILAR Standing Committee for Health Professionals in Rheumatology was started in 2001 to encourage other rheumatology leagues to hold special sessions for health professionals and patients during their congresses and to start a standing committee in their executives27. RESTRUCTURING ILAR In 1997 plans were made for restructuring ILAR. This initiative gained momentum when it became clear that pharmaceutical companies had decided to give priority to EULAR and ACR meetings, rather than to ILAR meetings. If no 4-yearly ILAR congresses were to be held, the main source of income for ILAR would cease. This polarization of resources to a few major rheumatology meetings in Europe and the USA underscores the need for a worldwide representative governing body, such as ILAR, that can promote interaction and communication among rheumatologists who are not always able to afford travel and those from developing regions in Asia, Africa, and South America. An increasing interest of WHO and the designation of 2000-2010 as the Decade of Bone and Joint Disease, together with exciting developments in rheumatology research and therapy, provide a great opportunity for world rheumatology28. To take a leadership role in this new world of musculoskeletal medicine ILAR clearly needed to reorganize itself, present a new, more representative, democratic and proactive face, as well as respond to the growing concerns about the burden of chronic rheumatic diseases worldwide. The ILAR General Assembly held in Edmonton in 2001 decided to develop a strategic plan and to restructure ILAR. A plan developed by Peter Brooks, Mark Hochberg, and Tony Woolf has been discussed at a number of workshops of the Executive Committee (February 2002, Lisbon, and June 2002, Stockholm). The plan was presented to the Executive Committee for ratification (December 2002, Bangkok). At that meeting further amendments were approved by the Executive, and Tahsin El-Hadidi presented the proposal to a special ILAR general assembly (EULAR, June 2003). The proposal was circulated in a postal ballot to all member nations of ILAR as required under the constitution and the restructuring and strategic plans were acknowledged. ILAR'S MISSION ILAR is committed to achieving the highest standards of care worldwide for patients with musculoskeletal conditions through promotion of good clinical practice, research, education, training, and public awareness, by fostering cooperation between the regional leagues28. The restructuring and strategic plan relate to 4 major issues: (1) Membership and appointment and voting rights of the Executive Committee; (2) appointment of the President-Elect; (3) ILAR meetings; and (4) establishment of a permanent secretariat. The 3 principles that guided the working parties in their deliberations were: ownership of ILAR by the regional leagues; establishment of a democratic process for election of holders of office; and assurance that this process and others relating to deliberations of ILAR were as transparent and open as possible. It was decided that for the time being no freestanding ILAR meeting would be organized, but that ILAR sponsored events should be held regularly in association with regional League meetings in addition to freestanding ILAR educational events. In the new ILAR all those in office including the Chairs of Standing Committees are made members of the Executive Committee and have full voting rights. The ILAR presidency rotates every 2 years. A careful selection procedure has been implemented (for details see: www.ilar.org). The President and President-Elect are appointed for a 2-year term only, and the appointment term for other office bearers has been reduced to 2 years, with possible reappointment for a further 2-year term. Standing Committees currently comprise Epidemiology, Clinical Studies, Pediatrics, Health Professionals, Education, and Social Agencies. The chairperson of this last committee is the president of ARI. PERMANENT SECRETARIAT A permanent secretariat was established during the ILAR executive meeting in Berlin, 2004, and a chief executive officer (CEO) was appointed (Freddy Arnauts); the CEO's task is to implement the strategic plan, keep track of all projects, serve as liaison with regional leagues and the pharmaceutical industry, and install a consistent communication platform. SPECIFIC PLANS During congresses of the regional leagues an ILAR lecture will be held. The first was given in Berlin by Anthony Woolf and the second in Vienna in 2005 by Peter Brooks. ILAR and COPCORD sessions will be held. ILAR will focus on developing countries and areas not served by the regional leagues. The 4 main domains ILAR is targetting are: education and training, epidemiology and clinical practice, raising public and political awareness, and research on the causes of musculoskeletal conditions. Among educational projects planned for 2005 are Guideline booklets. This is a series of 3 booklets on guidelines about the following classes of drugs: corticosteroids, nonsteroidal antiinflammatory drugs, and disease modifying antirheumatic drugs. The series will be developed for distribution to physicians in regions where there are no rheumatologists, where practical guidance is needed in the use of rheumatologic drugs. Visiting professorships. ILAR will organize visiting professorships to countries with minimal or underdeveloped rheumatology services, to promote awareness and improve skills in management of musculoskeletal conditions. The first visit was to Kenya in March 2005 by Luis Espinosa (New Orleans, USA) and organized by Dr. Omondi Oyoo. Plans are being made for Bangladesh, Fiji Islands, Bolivia, and Nicaragua. ILAR fellowships. Candidates will be proposed by the regional league with written approval of the national rheumatologic organization. The candidate should also obtain written support of his/her university, including a guaranteed job in the institution, for a minimum of 2 years (preferably 4 years), following completion of a one-year fellowship, to complete the Masters program, and to make an optimal contribution to rheumatology research and teaching in his/her country. The ACR and AHPR recognize the importance of working together with ILAR to disseminate existing educational materials and to use them in support of ongoing educational projects such as those described above. Initial contacts were made during the APLAR congress in Jeju, Korea, and further discussed during a meeting held at the ACR/AHPR congress in San Antonio, USA. This led to distribution of the "core curriculum" CD to the trainees during a visiting professorship in Kenya. EXCITING PERSPECTIVES The COPCORD epidemiological program and the OMERACT initiative will continue to thrive. The contacts with WHO will be intensified during a WHO-ILAR/Bone and Joint Decade meeting in June 2005 in Vienna, on the burden of disease. In the coming years ILAR plans to hold a joint meeting with the WHO to ratify the core sets of outcome measures and recommendations arising out of OMERACT5-7. Ties with other rheumatology organizations like the ISRT, and disease-specific organizations like those for lupus, osteoporosis, and osteoarthritis will be strengthened, as we will need to work together when the economy is less strong and financial resources scarce. ILAR's interactive website http://www.ilar.org, which is appreciated worldwide, will be updated in the coming years. ILAR's official journal Clinical Rheumatology, published regularly in electronic and print format, will represent all regions of the world under its new editor Paul Davis. CONCLUSION ILAR is the only worldwide organization — apart from the Bone and Joint Decade — that represents physicians, scientists, patients, and health professionals. ILAR has a major responsibility and as it is the only world organization for rheumatology it cannot be replaced by any regional or national organization — however powerful or rich — regarding its contacts with the WHO, the United Nations, and the World Bank. When the Bone and Joint Decade movement ends in 5 years, we expect ILAR will benefit from this opportunity to put musculoskeletal disorders high on the political agenda. Worldwide, orthopedic surgeons and rheumatologists have much in common. For example, in Japan the rheumatological society was founded by an orthopedic surgeon, Dr. Ikuo Nagaja. Thus ILAR appears to be the logical organization to assume tasks of the Bone and Joint Decade when the movement ends in 2010. Under the inspiring leadership of Abe Garcia Kutzbach, we foresee a healthy and prospering New ILAR. ACKNOWLEDGMENT Our thanks to J. Dequeker, P. Brooks, and J. Darmawan for their suggestions. 2. Engleman EP. International League Against Rheumatism — a brief history and update. Arthritis Rheum 1986;29:929-31. [MEDLINE] 3. Muirden KD. What does ILAR do? [editorial]. Br J Rheumatol 1990;29:243-4. [MEDLINE] 4. Muirden KD. The International League of Associations for Rheumatology and the information deficit [editorial]. Br J Rheumatol 1993;32:1033-6. [MEDLINE] 5. Muirden KD. The developing relationship between the World Health Organization and the International League Against Rheumatism. J Rheumatol 1991;18:793-5. [MEDLINE] 6. Rasker JJ, Dequeker J. The ties of ILAR and WHO. Acta Orthop Scand 1998;69 Suppl 281:63-4. 7. Muirden KD. The origins, evolution and future of COPCORD. APLAR J Rheumatol 1997;1:44-8. 8. Darmawan J, Muirden KD. WHO-ILAR COPCORD. Perspectives, past, present and future [editorial]. J Rheumatol 2003;30:2320-3. [MEDLINE] 9. Chopra A. COPCORD — An unrecognized fountainhead of community rheumatology in developing countries. J Rheumatol 2004;31:2320-3. [MEDLINE] 10. WHO Scientific Group. The burden of musculoskeletal conditions at the start of the new millennium. WHO technical report series 919. Geneva: WHO; 2003. 11. Boers M, Brooks PM, Tugwell P. OMERACT: state of the ACT. J Rheumatol 1995;22:980-1. 12. Brooks P, Hochberg M. Outcome measures and classification criteria for the rheumatic diseases. A compilation of data from OMERACT (Outcome Measures for Arthritis Clinical Trials), ILAR (International League of Associations for Rheumatology), regional leagues and other groups. Rheumatology Oxford 2001;40:896-906. [MEDLINE] 13. Pham T, van der Heijde D, Lassere M, et al. Outcome variables for osteoarthritis clinical trials: the OMERACT-OARSI set of responder criteria. J Rheumatol 2003;30:1648-54. [MEDLINE] 14. Gladman DD, Strand V, Mease PJ, Antoni C, Nash P, Kavanaugh A. OMERACT 7 psoriatic arthritis workshop: synopsis. Ann Rheum Dis 2005;64 Suppl ii:1. 15. Petty RE, Southwood TR, Baum J, et al. Revision of the proposed classification criteria for juvenile idiopathic arthritis: Durban, 1997. J Rheumatol 1998;25:1991-4. 16. Petty RE, Southwood TR, Manners P, et al. International League of Associations for Rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton 2001. J Rheumatol 2004;31:390-2. 17. Morales-Torres J, Reginster JY, Hochberg MC. Rheumatic and musculoskeletal diseases and impaired quality of life: a challenge for rheumatologists. J Rheumatol 1996;23:1-3. [MEDLINE] 18. Strand CV, Russell AS. WHO/ILAR Taskforce on quality of life. J Rheumatol 1997;24:1630-3. [MEDLINE] 19. Dequeker J, Rasker JJ. High prevalence and impact of rheumatic diseases is not reflected in the medical curriculum: the ILAR undergraduate medical education in rheumatology (UMER) 2000 Project. Together everybody achieves more. J Rheumatol 1998;25:1037-40. [MEDLINE] 20. Dequeker J, Rasker JJ. Effectively addressing common health concerns: the case of rheumatic diseases. Changing medical education and medical practice. WHO newsletter 1998;13:10-1. 21. Dequeker J, Rasker JJ, Woolf AD. Educational issues in rheumatology. Ballieres Clin Rheumatol 2000;14:715-29. [MEDLINE] 22. Armstrong R, Rasker JJ, Dequeker J. An insight into rheumatology resources on the world wide web. Rheumatology Oxford 1999;38:1028-9. 23. Armstrong R, Rasker JJ. http: //www.ilar.org. A source of information for rheumatologists, allied health professions, medical students and the general public. Ann Rheum Dis 1999;59:241-2. [MEDLINE] 24. Dequeker J. 23 years editorship of Clinical Rheumatology: experiences and perspectives [editorial]. Clin Rheumatol 2005;24:1-2. [MEDLINE] 25. Dequeker J, Rasker JJ, editors. Undergraduate education in rheumatology, challenges for the millennium. J Rheumatol 1999;26 Suppl 55:3-5. 26. Rasker JJ, Wolfe F, editors. Longterm followup of patients with rheumatoid arthritis. The worldwide experience. J Rheumatol 2004;31 Suppl 69:1-69. 27. Rasker JJ. ILAR News. Report and review on the achievements and future plans of the ILAR Standing Committee Health Professionals. Clin Rheumatol 2004;23: xxxx. 28. Dequeker J, Rasker JJ, El-Hadidi T. Globalization of rheumatology: activities of ILAR. Think global — act local [editorial]. J Rheumatol 2001;28:227-31. [MEDLINE] |
