Professor Maxime Dougados, President, European League Against Rheumatism
President Professor Maxime Dougados outlines the role that EULAR plays in facilitating better research practices and decision making in dealing with the challenges of rheumatic and musculoskeletal diseases
What is the European League Against Rheumatism (EULAR) and who does it represent?
Founded in 1947, EULAR is a European umbrella organisation which represents scientific societies, health professionals, associations and organisations of people with arthritis/rheumatism throughout the continent. With 45 scientific member societies, 35 patient organisations coming together under the roof of the Standing Committee of People with Arthritis/Rheumatism in Europe (PARE) and 11 health professionals associations, EULAR underscores the importance of combating rheumatic diseases not only by research and medical means, but also through a wider context of care for rheumatic patients and a thorough understanding of their social and other needs. At the European level, EULAR is representing the interests of the entire rheumatic disease community and is the natural partner of European policy makers when policies and regulatory frameworks are developed.
How would you define rheumatic diseases and how prevalent are they across Europe?
Rheumatic diseases comprise all painful conditions of the musculoskeletal system. More than 200 different diseases have been identified spanning from various types of degenerative joint and soft tissue disorders to osteoporosis, from arthritis to systemic connective tissue diseases. Rheumatic conditions affect the joints, tendons, ligaments, bones and muscles. Common symptoms are pain, swelling and stiffness. Some rheumatic diseases also involve internal organs.
People from all age groups and both genders can develop a rheumatic disorder. Rheumatic diseases affect the largest number of individuals in the industrialised world, with up to one third of people of all ages being affected at some point during their lifetime. The consequences for those concerned include impaired quality of life, reduction of physical function, disability and often premature death. Rheumatic diseases elicit the highest costs to European healthcare and socioeconomic systems by virtue of direct expenses for medicines, surgery, physiotherapy and hospitalisation. In addition, social care and production losses, sick leave, disability pensions, rehabilitative measures and expenses for caretaking result in enormous indirect costs. Rheumatic and musculoskeletal diseases (RMDs) are among the most prevalent, disabling and costly chronic conditions, as emphasised recently in a large international epidemiological study conducted under the umbrella of the World Health Organization (The Lancet, December 2012).
As with all debilitating diseases, the welfare of patients with rheumatic complaints is the foremost concern. However, rheumatic disorders also bear an economic burden. Can you elaborate on this?
In Europe, more than 120 million people (one in four citizens) suffer from a chronic musculoskeletal condition. Many of them have developed some sort of disability or impairment which reduces their mobility, limits their independence and, in a large number of cases, prevents them from continuing normal working and social lives. RMDs, as well as the disabling characteristics of these conditions, have a very negative impact on the European economy. Being the most common cause of severe long-term pain and physical disability, they represent the main cause of early retirement and long-term sick leave in Europe, which significantly affects the productivity and costs of companies.
The burden of RMDs on individuals and societies is enormous, surpassing the impact of many of those diseases that usually swallow the attention of media and policy makers due to their higher mortality rates or visibility. RMDs represent the most disabling group of diseases affecting the working population, accounting for most early retirement from the labour market. This not only imposes an enormous burden on the overall economy and on the health and social systems, it also affects the quality of life of dozens of millions of people throughout Europe, not only in terms of their mobility but also in terms of their economic wellbeing.
Could you elucidate the range of research projects or areas EULAR is supporting?
In general terms, it is the objective of the EULAR Executive Committee to promote actions and/or projects aimed at improving the knowledge and/or recognition of musculoskeletal disorders. Our chief aim is to contribute to the improvement of outcome for patients with rheumatic disorders. Apart from projects devoted to education and research, other initiatives aimed at facilitating the conduct of clinical studies or at improving the management of musculoskeletal disorders are supported.
EULAR is currently also funding a number of research projects run and managed by investigators from around Europe to foster R&D in the pathophysiology and therapy of systemic sclerosis, to further work in the field of patient-reported outcomes including cross-cultural validation and dissemination of instruments across Europe, as well as to make advances in understanding of pain from a clinical and epidemiological perspective.
What advancements in clinical research has the League been involved with in recent times?
EULAR is contributing to research activities at three different levels:
• Elaboration, dissemination and implementation of recommendations for the management of the main RMDs
• Elaboration of criteria that allow RMDs to be recognised (eg. classification/diagnostic criteria) and/or monitored (eg. responder criteria)
• Facilitation of both the conduct of clinical research studies (eg. conducting and analysing data observed in different European registries aimed at evaluating the safety/efficacy profile of biologics in daily practice) and the conduct of basic research studies by financially supporting selected research projects and also by organising European rheumatology research workshops
EULAR has awarded the Meritorious Service Award in Rheumatology to deserving researchers since 2000. Could you discuss the decision to acknowledge the work of last year’s recipient, Professor Hasan Yazici?
The choice of the EULAR Meritorious Service Award in rheumatology is based on different parameters, including the role of the recipient as a researcher but also as a leader in the field of rheumatology. Professor Hasan Yazici founded the Turkish School of Rheumatology and has actively participated in numerous international initiatives. From a pure scientific point of view, he has hugely contributed to a better knowledge of the physiopathology, recognition and management of Behcet’s disease – a rheumatological disorder observed in different countries and, in particular, the Mediterranean.
How are collaborative ties with the American College of Rheumatology (ACR) helping to strengthen EULAR’s position and activities?
The development of a positive relationship between EULAR and ACR over the last decade or so has fostered common approaches to the classification of musculoskeletal disorders and the propagation of common goals in the generation of new protocols and treatment approaches. We work together for mutual benefit to foster the exchange of information and thereby generate clinical benefit for our patients, as well as training opportunities for the next generation of practitioners and investigators.
Increasingly, the rheumatology community has embraced the biologic therapeutic revolution and the advent of novel therapeutic strategies across the range of RMDs. In addition, as the pace of pathogenesis discovery has accelerated, the need for a common approach to integration of discovery-based approaches has grown. EULAR and ACR increasingly act together to deliver across this range of challenges, working to furnish a positive future for our patient community in the coming decade.
To what extent do education and training form a key strategic area of EULAR?
Education and training related to RMDs are key strategic areas of EULAR. We seek to design an up-to-date high quality educational programme for rheumatologists and health professionals that caters to their immediate and changing needs. EULAR especially strives to offer courses and educational materials that cover niches or complement existing training opportunities and products.
Over time, EULAR has developed a broad educational offering which today includes courses, both physical and electronic; rheumatology textbooks; DVDs demonstrating diagnostic and treatment practices; as well as Workshops and Fellows sessions scheduled at the annual EULAR congress. EULAR also provides educational grants to individuals who wish to improve skills and knowledge through research and training stints abroad or educational visits. Individuals submitting an abstract to the EULAR congress may apply for a travel bursary, which covers a substantial part of the cost of attending the congress.
It is the objective of EULAR to make a targeted contribution to training and further education of young rheumatologists and health professionals, complementing the standard range of opportunities provided by universities, hospitals and other institutions. To this end, EULAR offers a limited number of bespoke courses, and in addition grants ‘EULAR scientific endorsement’ as a mark of scientific quality to selected courses and meetings run by established providers in Europe.
EULAR courses are conceived and developed under the supervision of the EULAR Standing Committee on Education and Training. They are organised by the EULAR Secretariat or, occasionally, by an external agency or university institute. The courses are independent branded products and, as such, fully financed by EULAR and the course participants. They are subject to specific criteria and guidelines. In view of its educational goals, EULAR is committed to keeping registration fees for participants as low as possible. For participants in financial need, we provide a number of course bursaries on application.
EULAR training opportunities are offered in both live and remote formats:
• Longstanding physical EULAR courses include the EULAR Ultrasound Course or the EULAR Systemic Lupus Erythematosus Course. Other EULAR courses are being considered or developed. It is at the discretion of EULAR to grant existing rheumatology courses the status of an ‘EULAR Course’, following the specific guidelines
• In recent years, EULAR has made substantial efforts and investment in building its eLearning offering. While the two-year Online Course on Rheumatic Diseases offers a comprehensive introduction to and update on all aspects of rheumatology, a number of shorter online courses offer flexible learning for the specialist. Our electronic training programme also includes a DVD demonstrating diagnostic and treatment practices in an effective way.
What is your vision for the next five years?
EULAR has conceived a strategic plan called VISION 2020 with a clear ambition to maintain and further develop several areas, such as the quality of different educational and scientific meetings, conduct of clinical and basic research studies, implementation of recommendations, role of patients and health professionals, and enrolment of young rheumatologists. I am personally convinced that the current friendly spirit at EULAR will easily permit us to reach such objectives.