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Survival of patients with rare diseases: a population-based study in Tuscany (Italy).

Francesca GoriniAlessio CoiLorena MezzasalmaSilvia BaldacciAnna PieriniMichele Santoro
Published in: Orphanet journal of rare diseases (2021)
An earlier diagnosis as well as the improvement in the efficacy of treatment resulted in a decreased risk of death over the years for specific RDs. The linkage between a population-based registry and other regional databases exploited in this study provides a large and accurate mass of data capable of estimating patients' life-expectancy and increasing knowledge on the collective burden of RDs.
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