Survival of patients with rare diseases: a population-based study in Tuscany (Italy).
Francesca GoriniAlessio CoiLorena MezzasalmaSilvia BaldacciAnna PieriniMichele SantoroPublished 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.
Keyphrases
- end stage renal disease
- newly diagnosed
- ejection fraction
- healthcare
- chronic kidney disease
- big data
- prognostic factors
- electronic health record
- peritoneal dialysis
- genome wide
- high resolution
- gene expression
- patient reported outcomes
- risk factors
- combination therapy
- human immunodeficiency virus
- deep learning
- free survival
- replacement therapy
- men who have sex with men
- antiretroviral therapy