Cohort profile: the hepatitis C virus (HCV) Research UK clinical database and biobank

John McLauchlan, Hamish Innes, John Dillon, Graham Foster, Elizabeth Holtman, Sarah McDonald, Bryony Wilkes, Sharon Hutchinson, Will Irving

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Abstract

Cohort purpose: Chronic hepatitis C Virus (HCV) infection is a leading cause of liver disease, both in the UK and world-wide. The HCV Research UK clinical database and biobank was set up to tackle key gaps in our understanding of infection, particularly in relation to: the effectiveness and long-term impact of antiviral therapies; and the genetic/virological factors influencing the natural history of infection.
Cohort Basics: The cohort comprises in excess of 10,000 participants. Each participant was enrolled between March 2012 and July 2015 following attendance at one of 56 specialist HCV clinics in the UK. The mean age at baseline is 48.5 years (range 0-88 years).
Follow-up and attrition: A core set of follow-up data (covering health risk behaviours, physical characteristics, comorbidities, virology, co-medications, liver disease status, antiviral treatment and mortality status) will be collected from participants biennially. Additional follow-up data is being sought for strategic subgroups (e.g. selected participants with advanced liver disease).
Design and Measures: This is a longitudinal cohort study. Baseline clinical and epidemiological data were collected through a standardised questionnaire completed by each participant at their enrolment. Follow-up data is elicited mainly through assessment of patient medical notes.
Unique features: Participant blood samples have been stored in a biorespository and are available for research studies. Thus far, full-length next-generation sequencing of viral RNA, and host genotyping has been carried out in ~2000 and ~4000 cohort participants respectively. These data can be linked to the clinical/epidemiological data collected at baseline and follow-up.
Reasons to be cautious: Participants included in this cohort represent ~50% of all patients in attendance at the selected recruitment clinics. Potentially, participants may differ from non-participants in epidemiologically/clinically relevant ways.
Collaboration and data access : Data and samples are accessible to researchers following successful application to the HCV Research UK Tissue and Data Access Committee (TDAC). More information on the TDAC application process can be found at the HCV Research UK website - www.hcvresearchuk.org.
Original languageEnglish
Pages (from-to)1391-1391h
Number of pages9
JournalInternational Journal of Epidemiology
Volume46
Issue number5
Early online date27 Feb 2017
DOIs
Publication statusPublished - Oct 2017

Keywords

  • hepatitis C
  • biobank
  • liver disease
  • host genomics
  • cohort
  • clinical database

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    McLauchlan, J., Innes, H., Dillon, J., Foster, G., Holtman, E., McDonald, S., Wilkes, B., Hutchinson, S., & Irving, W. (2017). Cohort profile: the hepatitis C virus (HCV) Research UK clinical database and biobank. International Journal of Epidemiology, 46(5), 1391-1391h. https://doi.org/10.1093/ije/dyw362