Version: 1.0.0 | Published: 15 Jul 2026 | Updated: 1 day ago
Documentation
Description:
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.
Is Part Of:
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Coverage
Spatial:
National
Typical Age Range:
0-150
Follow Up:
Continuous
Provenance
Origin
Purposes:
- Statutory
- Care
Sources:
- EPR
- Other
- LIMS
Collection Situations:
- Secondary care - Accident and Emergency
- Secondary care - Outpatients
- Secondary care - In-patients
- Prescribing - Hospital
- Other
- Clinic
Temporal
Accrual Periodicity:
Irregular
Start Date:
01 January 1994
End Date:
01 March 2025
Time Lag:
Variable
Accessibility
Access
Access Rights:
Delivery Lead Time:
Variable
Jurisdictions:
UK
Data Controller:
Thames Valley and Surrey Secure Data Environment (SDE)
Data Processor:
Thames Valley and Surrey Secure Data Environment (SDE)
Usage
Data Use Limitations:
No restriction
Data Use Requirements:
- Project-specific restrictions
- User-specific restriction
Format and Standards
Vocabulary Encoding Schemes:
- ICD10
- NHS NATIONAL CODES
- LOCAL
- SNOMED CT
- OTHER
Conforms To:
- NHS DATA DICTIONARY
- LOCAL
Languages:
en
Formats:
text/comma-separated-values
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Hull University Teaching Hospitals NHS Trust
2808
14 July 2026
Persons
Royal Liverpool and Broadgreen University Hospitals NHS Trust
941
14 July 2026
Persons
Oxford University Hospitals NHS Trust
5276
14 July 2026
Persons
University Hospitals Birmingham NHS Trust
12545
14 July 2026
Persons
University Hospital Southampton NHS Trust
4609
14 July 2026
Persons
Cambridge University Hospitals NHS Trust
3516
14 July 2026
Persons
Combined (linked)
48313
Count
15 July 2026
Persons
Nottingham University Hospitals NHS Trust
3795
14 July 2026
Persons
University College London Hospitals NHS Trust
2570
14 July 2026
Persons
Imperial College Healthcare NHS Trust
12250
14 July 2026
Persons
Central North West London NHS Foundation Trust
2500
14 July 2026