“Within the EU only the Netherlands has good data on hepatitis B and C, while in 16 EU countries, the data are either poor or non-existent.”
The Economist – World Hepatitis Alliance
With rollout of the National HCV Protease Inhibitor Treatment Programme in 2012, we recognised the need for a national database to prospectively collect and collate data on treated patients to allow true clinical and economic outcomes to be assessed following the introduction of these agents in routine clinical practice, without the strict inclusion/exclusion criteria applied in the clinical trial setting. Consequently, the ICORN Hepatitis C Treatment and Outcomes Registry was developed in 2012, and a prospective, longitudinal, observational outcomes study for patients with hepatitis C treated with direct-acting antiviral agents commenced. To date, approx. 6,000 HCV infected patients engaged in specialist care are registered with the ICORN Treatment Registry.
“There is a real need for a national register of HCV, as outlined in the National Strategy, which would determine true prevalence, acquisition risks and treatment progress” Prof C. Bergin
o What is a Patient Treatment Registry? – see paragraph on website
o How does it works – ICORN HCV Treatment Registry – see Data Management on website
o Reports from the Registry (Aisling to provide)
o Forms to download (Aisling to provide)