Using registries for research in CF. How can we be sure about the outputs?

In healthcare, we have kept notes on people with diseases for over 4000  years [1]. These have been a combination of subjective commentary and objective measurement. In the past 30 years recording data on patients has been systematised through disease registries and electronic patient records (EPR). We now have extensive registries in many diseases with robust cross -sectional and more importantly, longitudinal collections of data. Registries have shown considerable utility in common and rare diseases [2,3].

Source: Journal of Cystic Fibrosis - April 10, 2019 Category: Respiratory Medicine Authors: J. Stuart Elborn, Tanja Gonska Tags: Editorial Source Type: research