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.
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 language | English |
|---|---|
| Pages (from-to) | 1391-1391h |
| Number of pages | 9 |
| Journal | International Journal of Epidemiology |
| Volume | 46 |
| Issue number | 5 |
| Early online date | 27 Feb 2017 |
| DOIs | |
| Publication status | Published - Oct 2017 |
Keywords
- hepatitis C
- biobank
- liver disease
- host genomics
- cohort
- clinical database
- Hepatitis C/epidemiology
- Humans
- Middle Aged
- Male
- United Kingdom/epidemiology
- Young Adult
- Biological Specimen Banks
- Adolescent
- Adult
- Female
- Aged
- Hepacivirus
- Cohort Studies
Documents and Links
- McLauchlan, J. et al (2017) Cohort profile: the hepatitis C virus (HCV) Research UK clinical database and biobank
Copyright The Author 2017. Published by Oxford University Press on behalf of the International Epidemiological Association. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.