Cohort Profile: The Hepatitis C Virus (HCV) Research UK Clinical Database and Biobank

Abstract

Why was the cohort set up?
Hepatitis C is a blood-borne virus that causes scarring and inflammation of the liver.1 The virus is also associated with extrahepatic disease, including non Hodgkins lymphoma,2 renal disorders3 and, probably, cardiovascular disease.4 Chronic hepatitis C virus (HCV) infection-referring to persistent carriage of the virus is a global problem affecting in excess of 140 million individuals5 and causing half a million deaths every year from liver disease.6
HCV Research UK is a consortium of leading stakeholders in the UK, including all the major adult and paediatric liver centres. The remit of HCV Research UK is to address critical gaps in our understanding of this virus. These gaps exist particularly in relation to: (i) the clinical course of HCV-related disease; (ii) the optimal clinical management of the virus (including the effectiveness and long-term impact of antiviral therapies); and (iii) the viral and host genetic factors influencing prognosis.

The HCV Research UK clinical database and biobank was set up in 2012 to advance our knowledge in these areas. It includes in excess of 10 000 patients from across the UK, who have attended a specialist HCV clinic for care/management of their HCV infection. Extensive epidemiological and clinical data have been collected for each participant, both at baseline and longitudinally thereafter, but the unique strength of this cohort is that each participant has further submitted a blood specimen for secure storage in a biorepository (‘biobank’). These biological samples can be used for viral and host genotyping as well as other appropriate research analyses. It is envisaged that integrating biological, epidemiological and clinical data in this way will encourage a more multidisciplinary approach to HCV research.

The clinical database is managed at the University of Nottingham, and the biobank is sited at the Centre for Virus Research (CVR) along with a satellite biobank at the University of Birmingham. In this profile report, we provide a broad overview of this cohort, including a detailed description of the participants, a summary of the data collected and an outline of its successes so far.

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Identifiers

ORCID for Salim Khakoo: orcid.org/0000-0002-4057-9091

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