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Epidemiology of systemic sclerosis: a multi-database population-based study in Tuscany (Italy).

Alessio CoiSimone BarsottiMichele SantoroFabio AlmerigognaElena BargagliMarzia CaproniGiacomo EmmiBruno FredianiSerena GuiducciMarco Matucci CerinicMarta MoscaPaola ParronchiRenato PredilettoEnrico SelviGabriele SimoniniAntonio Gaetano Tavoninull nullFabrizio BianchiAnna Pierini
Published in: Orphanet journal of rare diseases (2021)
The multi-database approach is important in the investigation of rare diseases where it is often difficult to provide accurate epidemiological indicators. A population-based registry can be exploited in synergy with health databases, to provide evidence related to disease outcomes and therapies and to assess the burden of disease, relying on a large cohort of cases. Building an integrated archive of data from multiple databases linking a cohort of patients to their comorbidities, clinical outcomes and survival, is important both in terms of treatment and prevention.
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