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GENNERE G eneric and E pidemiological N etwork for N ephrology and R h e umatology

GENNERE G eneric and E pidemiological N etwork for N ephrology and R h e umatology. P. Gaudin*, Hao Ping* , ++ , F. Raguimov ++ , M. Simonet ++ , A. Simonet ++ , M. Forêt***, P. Landais + , Dr D. Guillon*** Rheum. Dpt*, AGDUC***, CHU A. Michallon Grenoble, Lab. TIMC ++ , UJF

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GENNERE G eneric and E pidemiological N etwork for N ephrology and R h e umatology

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  1. GENNEREGeneric and Epidemiological Network for Nephrology and Rheumatology P. Gaudin*, Hao Ping*, ++, F. Raguimov++, M. Simonet++, A. Simonet++, M. Forêt***, P. Landais+, Dr D. Guillon*** Rheum. Dpt*, AGDUC***, CHU A. Michallon Grenoble, Lab. TIMC++, UJF LBIM University Necker Paris+

  2. Aspects épidémiologiquesPolyarthrite rhumatoïde (PR) Rheumatoid arthritis (RA) • Prévalence : 0.5% population caucasienne • Incidence : 40/100 000 habitants • Arthrite juvénile idiopathique • 15 ans et 3 mois : PR • Espérance de vie diminuée, morbidité CV +++ • Sex ratio : 4F/1H • Pic de fréquence : 40-50 ans • Étiologie multifactorielle

  3. Aspects médico-économiques • 15% de formes graves • 50% arrêt activité prof. à 5 ans • 10% invalidité III en 2 ans • 25% temps aménagé • coûts directs : traitements, hospitalisations… • coûts indirects : arrêts travail, prestations sociales • coûts intangibles : douleur, anxiété, déformations, QDV

  4. Economic Burden in Europe • In West Germany, RA costs were >DM 40 billion (US $17.6 billion) in 1994 for treatment alone • In the UK, average RA outpatient cost per case per year was £798 (US $1,126) and £1,253 (US $1,769) per inpatient in 1997 • Rheumatoid arthritis per capita costs average: • 49% of cost of cancer • 68% of cost of stroke • 82% of cost of coronary heart disease • 5 times the cost of motor vehicle accidents Knorr U. Versicherungsmedizin 1994.Rothfuss J. Akt Rheumatol 1997.Lubeck DP, et al. Arthritis Rheum 1986;29:488–493.Lorig KR, et al. Arthritis Rheum 1993;36:439–446.

  5. Indirect Productivity Costs of RA • Sweden: 37% retired early after the first 2 years of RA • Finland: 64% retired after 8 years • The Netherlands: 60% were not employed • 73% full disability from RA • 21% partial disability from RA

  6. Risk Factors for Increased Morbidity and Mortality in RA • Social factors • Low socioeconomic status • Lack of formal education • Psychosocial stress • Low HAQ scores • Physical factors • Extra-articular manifestations • Elevated CRP and ESR • High titers of RF • Erosions on x-ray • Duration of disease Bukhari M, et al. Arthritis Rheum 2002;46:906-912.

  7. AGENT ETIOLOGIQUE Ag MALADIE + AMPLIFICATION CPA LT MEDIATEURS (AUTO)IMMUNITE

  8. Int. J. Rheumatol. 2003;1,2-9

  9. Goals GENNERE I • Tool for the follow up of RA patients • Focused on epidemiological data • Extension possible to SLE, AS • Tool made with and by chinese partners • Connexion between different hospitals in Shanghai first GENNERE II • Data ware house • Connexion between different cities

  10. Workplan-Kickoff meeting April 2003 • Study and choice of software tools • Extension and adaptation of generic tools • Analysis of users requirements • Database design • Database validation • Software design • Training of chinese partners • Software validation • Database implementation

  11. GENNERE I II n Patient 1 Patient 2 Patient 3 … … … … Patient n TO Tx Longitudinal and transversal studies + data ware house +++ Limites : épidemiologiste, besoins, adaptations

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