Guidance

Hepatitis C national register

The register helps inform the natural history of hepatitis C (HCV) infection in the UK with patient data.

• From: UK Health Security Agency
• Published: 2 April 2013
• Last updated: 22 May 2024 — See all updates

Documents

HCV national register: registration form

PDF, 500 KB, 2 pages

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HCV national register: follow-up form

PDF, 450 KB, 2 pages

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HCV national register: patient information sheet

PDF, 53.6 KB, 2 pages

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HCV national register: parent information sheet

PDF, 55.1 KB, 2 pages

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Hepatitis C National Register privacy information

Ref: GW-1994

HTML

Details

The register is based at UK Health Security Agency (UKHSA) in London.

A multidisciplinary team, under the guidance of an expert steering group, undertakes the work of the register.

The register contains data for one of the largest cohorts of patients in Europe who have acquired their hepatitis C infections on a known date. Most cases are transfusion recipients who were traced during the national HCV lookback programme.

Systematic collection of clinical data using standardised report forms allows us to gather data consistently about every 3 to 5 years. This data, along with linked mortality and cancer data for cases and controls, allow us to establish the clinical course of HCV infection, and investigate risk factors for progressive disease.

Ongoing recruitment of paediatric and other HCV infections with known dates of acquisition enables us to inform and compare the clinical course of HCV infection in other important patient groups.

See national register of HCV: published papers on the UK Government Web Archive.

See HCV national register: clinicians bulletin on the UK Government Web Archive.

See UKHSA privacy notice.

Blood Safety, Hepatitis, Sexually Transmitted Infections (STI) and HIV Division
UK Health Security Agency
61 Colindale Avenue
London
NW9 5EQ

Email the hepatitis team at: hepatitis@ukhsa.gov.uk

Published 2 April 2013
Last updated 22 May 2024 + show all updates

1. 22 May 2024

   Updated contact details.

2. 20 April 2021

   Updated patient and parent information sheets.

3. 5 March 2021

   Updated body text in line with Hepatitis C National Register privacy information.

4. 4 March 2021

   Added Hepatitis C National Register privacy information.

5. 10 June 2020

   Updated patient and parent information sheets.

6. 10 October 2019

   Removed patient and parent consent form.

7. 2 April 2013

   First published.