The Epidemiology of Transition into Adulthood of Rare Diseases Patients: Results from a Population-Based Registry.

ABSTRACT: Background: 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, which has a considerable impact both on patients' care and on the health services. 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). Methods: Longitudinal cohorts of patients born in the years 1988 to 1998 and enrolled in the VRRDR in their paediatric age were identified. Data referred to this group of patients, experiencing transition from paediatric to adult age duri

SUBMITTER: Mazzucato M 

PROVIDER: S-EPMC6210512 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature