The Epidemiology of Transition into Adulthood of Rare Diseases Patients

Despite the fact that a considerable number of patients diagnosed with childhood-onset rare diseases (RD) survive into adulthood, limited information is available on the epidemiology of this phenomenon.This study describes the epidemiology of transition in a population of RD patients, using data from the Veneto Region Rare Diseases Registry (VRRDR), a web-based registry monitoring since 2002 a consistent number of RD in a defined area (4.9 million inhabitants). The data reported can be considered as minimum values for estimating the size of this increasing population. These figures are valuable for clinicians, patients and health planners. More information you can find here.