Updated 03 May 2019

Registry Variables and Definitions

The ECFSPR collects anonymised demographic and clinical data from consenting CF patients in Europe, according to agreed inclusion criteria, definitions and coding. You will find a detailed list of variables, their definitions and the inclusion criteria here.

Real-time detailed information from individual patient visits throughout the year can be collected with the Patient Encounter module in ECFSTracker. Once a year an annual summary data is extracted from the system and exported to Europe, thereby minimizing any data redundancy. You will find a detailed list of Encounter variables and their coding here.