GENNERE Generic 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 +

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

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

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 Rothfuss J. Akt Rheumatol Lubeck DP, et al. Arthritis Rheum 1986;29:488–493. Lorig KR, et al. Arthritis Rheum 1993;36:439–446.

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

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:

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

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

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

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

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