ICORN Treatment Registry
There is a real need for a National Registry of HCV, which would determine true prevalence, acquisition risks and treatment progress…
With the rollout of the direct-acting antiviral agents in 2012 , ICORN 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. Consequently, the ICORN Hepatitis C Treatment and Outcomes Registry was established, and a prospective, longitudinal, observational outcomes study for patients with hepatitis C treated with direct-acting antiviral agents commenced.
The ICORN Treatment Registry, established and developed by ICORN in collaboration with the NCPE, has supported the following phases of treatment:
• The 2012 DAA Treatment Programme.
• The 2014 DAA Early Access Programme for patients with decompensated liver disease.
• The 2015 DAA Treatment Programme for patients with compensated liver disease.
The ICORN Treatment Registry has been pivotal in the successful continued provision of HCV DAA treatment to patients in Ireland and has become an invaluable source of health intelligence to clinicians, policy makers, health service planners and the research community. The ICORN Treatment Registry has helped optimise management of patients through enabling a better understanding of the burden of chronic HCV infection and the impact of the use of DAAs on disease characteristics. Outputs from the ICORN Treatment Registry have also been used to inform the development of national clinical pathways and clinical guidelines, and have facilitated informed analysis of the clinical effectiveness and cost effectiveness of DAA drug regimens in an Irish setting.
In 2015, following the establishment of the National Hepatitis C Treatment Programme (NHCTP), the ICORN Treatment Registry transitioned to the National Hepatitis C Treatment Programme under the governance of the NHCTP and the NCPE.