KBVR/SRBR INITIATIVE ON PEDIATRIC RHEUMATISM KBVR: Koninklijke Belgische Vereniging voor Reumatologie SRBR: Société Royale Belge de Rhumatologie
CONTENTS •Who makes KBVR/SRBR ? •Rheumatism in general. •Rheumatic diseases at children. •Our new project on pediatric rheumatology. •Why should you sponsor this project? •Our budget: which support are we looking for? •Contact.
WHO MAKES KBVR/SRBR? NL
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The Koninklijke Belgische Vereniging voor Reumatologie (KBVR) or The Société Royale Belge de Rhumatologie (SRBR) was founded in 1926. SRBR aims to advance the clinical practice and the scientific knowledge in the field of rheumatic complaints. The Society is governed by a Board composed of a President, two Vice-Presidents, a Secretary and a Treasurer. President of the Board is actually Prof. dr. Herman Mielants (Ghent University). You can click here for the members of the Board. SRBR advances the study of rheumatology, and it has a Program, for which it tries to raise the necessary funds, to promote scientific research in rheumatology. SRBR covers all aspects of rheumatology. It pays special attention to patient-bound matters, and therefore a Social Services Committee has been set up that works in close cooperation with patients’ associations. Patients cannot effectively be helped if rheumatologists have to work in difficult or impracticable conditions. For that reason SRBR cannot neglect the occupational aspects of the profession. SRBR holds an annual scientific and educational congress. In 2004 this congress was organized in Namur. Next congress is planned in Ghent (28 sept - 1 okt 2005).
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The Board of the Society Herman Mielants, president Nathalie Franchimont, vice-president Luc Declercq, vice-president Patrick Durez, general secretary Filip De Keyser, assistant secretary René Westhovens, treasurer Valérie Badot Jean-Pierre Brasseur Griet De Brabanter Luc De Clerck Dirk Elewaut Robert François Piet Geusens Stefan Goemaere Luc Goethals Frédéric Houssiau Frank Luyten Stefaan Poriau Serge Steinfeld Lucas Williame Luc Francx (co-opted) Jean-Philippe Hauzeur (co-opted) Jan Remans (co-opted) Gust Verbruggen (co-opted) Xavier Janssens, (co-opted) ...12/10/2004
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KBVR De Koninklijke Belgische Vereniging voor Reumatologie www.kbvr.be De Koninklijke Belgische Vereniging voor Reumatologie v.z.w. is een wetenschappelijke vereniging, welke Reumatologen uit de academische en uit de niet-academische wereld groepeert en instaat voor de medische kwaliteit van de bijscholing van zijn leden. De KBVR werkt daarin samen met paramedici en patientenverenigingen die hetzelfde doel nastreven: links voor patiëntenverenigingen Reumatologen zijn specifiek geschoold om een specifieke diagnose bij reumatische aandoeningen te kunnen stellen. Reuma is een verzamelnaam van aandoeningen van het bewegingsapparaat (gewrichten, spieren, pezen en skelet). De Koninklijke Belgische Vereniging voor Reumatologie heeft tot opdracht haar leden vertrouwd te maken met de allernieuwste en allerbeste technieken en volgt de internationale maatstaven desbetreffend. De voorzitter van de Raad van Bestuur is Prof. dr. Herman Mielants (Universiteit Gent). U kan hier klikken voor de leden van de Raad van Bestuur. De KBVR organiseert jaarlijks een internationaal congres. In 2004 werd dit congres gehouden in Namen. Dit jaar heeft het plaats in Gent (28 sept. tot 1 okt.).
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SRBR La Société Royale Belge de Rhumatologie www.srbr.be La Société Royale Belge de Rhumatologie (SRBR) a été fondée en 1926. Son but est d’ augmenter les connaissances cliniques et scientifiques dans le domaine des affections rhumatismales. Elle est dirigée par un Conseil d’ Administration, avec un président, deux vice-présidents, un secrétaire et un trésorier. Le président actuel est le Professeur Herman Mielants de l’ Université de Gand. Vous pouvez trouver la liste des membres ici du Conseil d’ Administration. La SRBR stimule les recherches et études. Elle a créé un Fonds pour la recherche scientifique en rhumatologie, pour lequel elle essaie de rassembler des moyens financiers. Elle s’ intéresse à tous les aspects de la rhumatologie et en particulier ceux qui touchent aux patients. C’ est pourquoi elle compte un Comité des Affaires Sociales, qui doit collaborer avec les sociétés de patients. Servir efficacement le patient est compromis si l’ exercice du métier de rhumatologue est difficile ou impossible; c’ est pourquoi la SRBR ne peut pas négliger les aspects professionnels de ses membres. La SRBR organise un congrès annuel. Celui de 2004 s’ est tenu à Namur et le suivant aura lieu à Gand (28sept-1okt 2005).
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RHEUMATISM NL
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Who Gets Arthritis? Anyone and almost everyone. Arthritis is not a condition linked exclusively with ageing, for the most common and serious forms often begin in young adults. Whether you're five years old or ninety years old, fit or unfit, you have a one-in-three chance of being afflicted by some form of rheumatic disease some time in your life. What are the symptoms? How do we handle if we have it? What is Arthritis? What is Rheumatism? Arthritis means inflammation of a joint. An inflamed joint is usually red, swollen, warm and painful. Rheumatism is a general term which includes not only problems with the joints, but any problem affecting the muscles or soft tissue of the body. Some of the areas associated with rheumatism include muscle strain, sprains, lumbago, sciatica, whiplash injury, disc disease, tendinitis, bursitis and fibrositis. Some types of arthritis and rheumatism can be prevented and effective treatment is available for all forms of these diseases. What are the Types of Common Arthritis? Some of the most common are rheumatoid arthritis, osteoarthritis, systemic lupus erythematosus, scleroderma, and gout. Others are juvenile arthritis, ankylosing spondylitis, psoriatic arthritis, infectious arthritis, fibrositis, bursitis and tendinitis. Although each of these diseases can affect individual people differently, each one follows a general pattern that separates it from the others.
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REUMATISCHE ZIEKTEN Reuma is een verzamelnaam van aandoeningen van het bewegingsapparaat (gewrichten, spieren, pezen en skelet). Meestal gaat het om pijn. Een correcte en specifieke diagnose is absoluut noodzakelijk om een doeltreffende therapie te kunnen instellen. Reumatologen zijn specifiek geschoold om een specifieke diagnose bij reumatische aandoeningen te kunnen stellen. De laatste 5 jaren is een enorme vooruitgang geboekt in de behandeling van reuma, dank zij de nieuwe medicatie's die een doelgerichte aanpak mogelijk maken. Een genezing van reuma behoort nu meer dan ooit tot de mogelijkheden. Dat reuma een kwaal van oudere personen zou zijn, is onjuist. Reuma komt ook voor bij kinderen, adolescenten en jonge volwassenen. Reumatische aandoeningen vormen één van de belangrijkste gezondheidsproblemen in de Westerse wereld. Ze liggen aan de basis van heel wat werkonbekwaamheid, veroorzaken bij de betrokkenen heel veel ongemak en zelfs invaliditeit, leiden in hun geheel tot belangrijke economische verliezen en nopen de maatschappij tot het bijpassen van vaak hoog oplopende verzorgingskosten. Reumatische aandoeningen worden ingedeeld in vormen van slijtagereuma (artrose) en ontstekingsreuma (artritis). Artrose is een verlies van gewrichtskraakbeen, dat een soort van binnenbekleding vormt voor elk gewricht. Dat veroorzaakt pijn bij gebruik en belasting van het gewricht in kwestie. Artritis daarentegen is een ontstekingsziekte die vaak ernstiger verloopt en ook in rust hevige pijnen teweegbrengt. Er zijn heel wat verschillende vormen van chronische artritis bekend.
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LES MALADIES RHUMATISMALES En réalité, il n’ y a pas qu’ un rhumatisme. Il faut parler des rhumatismes ou des maladies rhumatismales. Il s’ agit de l’ ensemble des maladies de l’ appareil locomoteur. Il existe en effet toute une série de maladies rhumatismales selon la cause ou le mécanisme qui les déclenche et l’ articulation touchée. Vous ne trouverez ici qu’ une énumération et une certaine classification des rhumatismes, qui vous montreront la complexité de la rhumatologie.
1. Les maladies inflammatoires: la polyarthrite rhumatoïde, arthrites juvéniles, spondyloarthrites, l’arthrite psoriasique, les rhumatismes associés aux maladies intestinales inflammatoires,comme la maladie de Crohn. 2. Les arthrites septiques ou réactives à un agent infectieux (virus, bactérie, parasite). 3. Les troubles métaboliques: la goutte, la chondrocalcinose, l’ hémochromatose, l’ostéoporose, l’ ostéomalacie, l’ hyperparathroïdie, le Paget. 4. L’ Arthrose. 5. Les rhumatismes des tissus mous: les douleurs du dos, la hernie discale, la sciatique, les tendinites, les bursites. 6. D’ autres causes des symptômes locomoteurs: comme par exemple l’ hépatite dans sa phase de début ou la sarcoïdose,les effets indésirables de certains médicaments.
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RHEUMATIC DISEASES AT CHILDREN Arthritis in Children World statistics show that 1 child in 1000 is affected by a form of juvenile arthritis. Arthritis in children can occur at any time, but it more commonly first occurs between ages 1 to 4 years and between 10 and 13 years. The cause of juvenile arthritis is unknown. Early diagnosis and treatment are essential. The main aim of treatment is to keep the joints moving, keep the muscles strong and limbs in a good position, so that the child enters adulthood with minimal damage to the joints.
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OUR NEW PROJECT ON PEDIATRIC RHEUMATOLOGY Why? Our main objective is to improve the quality of health care of pediatric rheumatology in Belgium. Rheumatic diseases in children are, fortunately, rare diseases. It is estimated that about 2-3000 children in Belgium suffer from juvenile idiopathic arthritis, although no detailed information exists to date. This hampers significantly both the patient and medical community involved in this medical subspecialty. Therefore, there are several reasons that underline the necessity for a national initiative: they include increasing the awareness of these diseases and their impact on patients, family and society (school community etc.); acquire detailed information on the patient population in Belgium, represent the pediatric rheumatology community as a group to official instances such as the RIZIV/INAMI. Because of the low frequency of these diseases it is mandatory to develop collaborative research programs.
OUR NEW PROJECT ON PEDIATRIC RHEUMATOLOGY How? The proposal will be conducted by the members of the Belgian Pediatric Rheumatology Working Group which represents all centres involved in pediatric rheumatology in Belgium and the Grand Duchy of Luxemburg. The group includes pediatric rheumatologists, either pediatricians or rheumatologists, and aims to improve collaboration between these different centres and express Belgian pediatric rheumatology at both the national and international level. There is general consensus within the group that a major goal is to generate a national patient registry of pediatric rheumatology in Belgium as a first tool to perform several research topics listed below. This registry would allow to obtain a detailed description of the patient population in Belgium including clinical features, therapy (drug and physical), etc.
OUR NEW PROJECT ON PEDIATRIC RHEUMATOLOGY What? 1. National patient registry on pediatric rheumatology. To establish this on a national scale, this requires some personnel designated to this specific task. We estimate that 2 full time equivalents (FTE) would be required for this (one for Flemish and one for the French speaking community) in total for a period of two years. Because of the specific requirements our preference would go to physical therapists that preferably already have entered a conversion program to nurse. They will not only be responsible for retrieving data from medical files, but will also be involved in contact with patients and parents by for example filling out questionnaires. We are convinced that this professional group combines several particular skills useful for this position. Furthermore, an electronical way of registration would allow to attract additional funding by instances such as e-health. As indicated before such a registry will be useful not only for future research, but also for interaction with official instances for example: to allow reimbursement of new drugs; rehabilitation programs etc. Associated to this clinical registry, a serum and DNA bank would be established for accompanying research programs 2. Research programs: There is considerable expertise in different areas within the pediatric rheumatology community. Listed below are some areas of interest/expertise that could be developed into detailed research projects in conjunction with the patient registry in the short and midterm. Research programs
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OUR NEW PROJECT ON PEDIATRIC RHEUMATOLOGY Research Programs 1.
Patient questionnaires: Current international clinical studies use the CHAQ questionnaire. Although very useful, it has the disadvantage of being rather time consuming. The centre for pediatric rheumatology U Gent has developed a much more simplified version which requires considerably less time to complete. Validation of this questionnaire in other centres and and assessing its value in measuring therapeutic benefit in JIA could be performed in a collaborative initiative.
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Prospective clinical follow-up studies: The patient registry could serve as a platform for future prospective clinical studies in which the impact of disease or therapy on for example growth, puberty etc. could be evaluated. This program can only be implemented once the patient registry is initiated
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Autoimmune serology: To date relatively little is known about autoantibodies in children suffering from paediatric diseases. The availability of newer and more sensitive technologies in the field of autoimmune serology needs to be applied to the field of paediatric rheumatology. U Gent and ULB have particular interest in this. More ambitious programs aimed at discovery of new autoantigens could also be implemented.
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Synovial tissue biology: some centres may have access to synovial tissue specimens at the occasion of needle arthroscopy performed for diagnostic or therapeutic purposes (lavage). This may offer opportunities to get more information on the mechanisms behind synovial inflammation and effect of new therapies in JIA by studying cellular infiltrates, gene and protein expression, etc.
OUR NEW PROJECT ON PEDIATRIC RHEUMATOLOGY Research Programs 5. Biomarker usage: The field of biomarkers is a rapidly emerging area in adult rheumatology. Several interesting proteins (myeloid related proteins, matrix metalloproteinases, etc.) have been shown to be of value in assessing disease activity. The potential value of most of these still needs to be assessed in children.
6. Bone biology and therapy response: the paediatric rheumatology of ULB and KUL have a particular interest in the effect of Etanercept therapy in polyarticular JIA and effects on linear growth, bone biology and body composition. Other partners within our group will also participate in the near future 7. DNA polymorphisms: establishing a DNA bank (see above) together with a patient registry would allow to study polymorphism (cytokines, host defense genes, etc.) in relation to clinical phenotype and therapy response. This program can only be implemented once the patient registry is established.
OUR NEW PROJECT ON PEDIATRIC RHEUMATOLOGY Expected Benefits The national patient registry can give a very close estimate on the distribution of the different juvenile rheumatic diseases in the Belgian population. This implies also an idea of the socio –economic consequences these diseases can have on the population as a whole as well as on the individual patient. Some research programs are aimed towards a better knowledge of the pathology in itself or its pathogenesis (i.e. bone biology and therapy response, autoimmune serology, biomarker usage DNA polymorphisms, synovial tissue biology) Other research programs have an interest in as well the clinical, functional impact as the psychological and social aspects of the juvenile rheumatic diseases (patient questionnaires, prospective clinical follow-up studies)
THE BUDGET Which support are we looking for? The registration project Salary cost of 2 FTE: Laptop : Specific software : 30days * 1000€ Expenses: Travel (16 participating centers have to be visited regularly): (20 km*0,25€/km) Documentation and office supplies:
196.000€ 150.000€ 2.500€ 30.000€ 6.000€ 5.000€ 2.500€
The research programs are done with different scientific departments. You can select and finance by 10.000 each of the specific research programs : 1. Patient questionnaires 2. Prospective clinical follow-up studies 3. Autoimmune serology 4. Synovial tissue biology 5. Biomarker usage 6. Bone biology and therapy response 7. DNA polymorphisms
THE BUDGET Which support are we looking for?
We suggest that you sponsor either entirely or partly the registration program or one of the specific research programs. Of course we greatly appreciate every other contribution to our project, be it financial or material.
CONTACT Dr. Jan Remans Weg naar As 123 3600 Genk Belgium tel.0032.89.362936 fax.0032.89352500 email:
[email protected]
