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NIHR HIC Viral Hepatitis and Liver Disease Dataset

Population Size

48,313

People

Population Size statistic card

Years

1994 - 2025

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

National

Geographic coverage statistic card

Lead time

Variable

Lead time statistic card

Summary

The NIHR Health Informatics Collaborative (HIC) Viral hepatitis and Liver Disease theme is collecting electronic health care records from people infected with viruses that predominantly affect the liver, to use in research for patient benefit.

The NIHR HIC Viral Hepatitis Theme has developed a database of anonymised clinical data:

  • to address important questions related to clinical outcomes in viral hepatitis
  • to share clinical data to demonstrate its usefulness in clinical research

Documentation

The NIHR Health Informatics Collaborative (HIC) Viral hepatitis and Liver Disease theme is collecting electronic health care records from people infected with viruses that predominantly affect the liver, to use in research for patient benefit.

Our main focus is currently advancing hepatitis B research. Chronic hepatitis B infection affects 254 million people globally and caused around 1.1 million deaths in 2022, primarily from cirrhosis and liver cancer (hepatocellular carcinoma [HCC]). We are leading a nationwide initiative, building on clinical expertise to collect and analyse mass real-world data from electronic patient records using multidisciplinary techniques (informatics, engineering, and analytics). This programme aims to understand the clinical trajectories and outcomes of HBV infection, including responses to antiviral therapy, development of advanced liver disease stage and liver cancer (HCC), and HBsAg loss.

We are also evaluating the impact of recently expanded treatment guidelines, the effectiveness of combination antiviral therapies, and examining how other health conditions (comorbidities) and metabolic factors affect disease outcomes. Additionally, we are investigating factors associated with care discontinuation. Hepatitis D virus (HDV) coinfection, which may worsen outcomes in people with hepatitis B, will also be characterised in terms of its prevalence in the UK and its impact on progression to severe liver disease. By informing intervention and care strategies, this programme is working towards better patient care and health outcomes for people living with hepatitis B in the UK and globally.

The NIHR HIC Viral Hepatitis Theme has developed a database of anonymised clinical data:

  • to address important questions related to clinical outcomes in viral hepatitis
  • to share clinical data to demonstrate its usefulness in clinical research

The database has been fully reviewed by the National Research Ethics Service.

Dataset type

Health and disease, Treatments/Interventions

Dataset population size

48313

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

Combined (linked)

48313

Count

15 Jul 2026

Persons

Cambridge University Hospitals NHS Trust

3516

14 Jul 2026

Persons

Imperial College Healthcare NHS Trust

12250

14 Jul 2026

Persons

Oxford University Hospitals NHS Trust

5276

14 Jul 2026

Persons

University Hospital Southampton NHS Trust

4609

14 Jul 2026

Persons

University College London Hospitals NHS Trust

2570

14 Jul 2026

Persons

Royal Liverpool and Broadgreen University Hospitals NHS Trust

941

14 Jul 2026

Persons

Hull University Teaching Hospitals NHS Trust

2808

14 Jul 2026

Persons

Nottingham University Hospitals NHS Trust

3795

14 Jul 2026

Persons

University Hospitals Birmingham NHS Trust

12545

14 Jul 2026

Persons

Central North West London NHS Foundation Trust

2500

14 Jul 2026

Provenance

Purpose of dataset collection

Statutory, Care

Source of data extraction

EPR, Other, LIMS

Collection source setting

Secondary care - Accident and Emergency, Secondary care - Outpatients, Secondary care - In-patients, Prescribing - Hospital, Other, Clinic

Image contrast

Not stated

Biological sample availability

None/not available

Details

Publishing frequency

Irregular

Version

1.0.0

Modified

15/07/2026

Coverage

Start date

01/01/1994

End date

01/03/2025

Time lag

Variable

Geographic coverage

National

Maximum age range

150

Follow-up

Continuous

Accessibility

Language

en

Alignment with standardised data models

NHS DATA DICTIONARY, LOCAL

Controlled vocabulary

ICD10, NHS NATIONAL CODES, LOCAL, SNOMED CT, OTHER

Format

text/comma-separated-values

Data Access Request

Dataset pipeline status

Available

Time to dataset access

Variable

Access method category

TRE/SDE

Jurisdiction

UK

Data use limitation

No restriction

Data use requirements

Project-specific restrictions,User-specific restriction

Data Controller

Thames Valley and Surrey Secure Data Environment (SDE)

Data Processor

Thames Valley and Surrey Secure Data Environment (SDE)

Dataset Types: Health and disease, Treatments/Interventions

Dataset Sub-types: Therapeutic,Preventive


Collection Sources: Secondary care - Accident and Emergency, Secondary care - Outpatients, Secondary care - In-patients, Prescribing - Hospital, Other, Clinic

Relationships: