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