GENNERE Generic and Epidemiological Network for Nephrology and Rheumatology P. Gaudin*, Hao Ping*, ++, F. Raguimov ++, M. Simonet ++, A. Simonet ++, M.

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+

Aspects épidémiologiques

Polyarthrite 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

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 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.

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;46:906-912.

Ag

+AGENTETIOLOGIQUE

(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 nPatient 1Patient 2Patient 3…………Patient n

TO Tx

Longitudinal and transversal studies + data ware house +++Limites : épidemiologiste, besoins, adaptations