National Hepatitis C Database

Data Collection Type
National data collections of health and social care in Ireland
Organisation

Health Protection Surveillance Centre (HPSC).

Year established

2005

Statement of purpose

In scope: To follow the natural and treated history of hepatitis C in people infected through blood and blood products administered in Ireland and to evaluate the impact of various host and virus factors on disease progression.

Coverage (geographical and temporal)

Consenting patients, and patients who have died, 77% of eligible patients. National data collection, initially carried out annually, subsequently moved to periodic rounds of data collection (once every 2-4 years). Most recent data collection was 2018.

Description/Summary

Database of persons infected with hepatitis C through the administration of blood and blood products in Ireland. Objectives of database

- To follow the natural history of infection in this group of people
- To evaluate the impact of various host factors on the progression of the disease
- To evaluate the outcomes of treatment To monitor the uptake of services
- To provide information for the planning and evaluation of health services
- To serve as a resource for future research into hepatitis C.

Data users

People infected through blood and blood products in Ireland, consultant hepatologists & gastroenterologists, hospitals & other healthcare providers, general public.

Data content

Age; sex; how patient became infected; medical conditions; results of tests; treatments received and treatment outcomes.

Data dictionary

Data dictionary not available.

National-level identifier variables

PPSN, IHI, hospital number, names and addresses are not included in the dataset.

Equity stratifiers

Equity stratifiers are not included in the dataset.

Data collection methodology

Data collected from medical records in Specialist Hepatology units across the country by a HPSC Research Nurse. Consent is required for all living patients.

Data were initially collected annually, but subsequently changed to periodically. The most recent period was for data from 2014 to the end of 2017 (covering a 4-year time period).

Clinical coding scheme

Cause of death and medical conditions coded using the World Health Organization (WHO) ICD-10 system. Medications coded using the Anatomical Therapeutic Chemical (ATC) coding system.

Size of national collection

Total number in database: 1,322, small numbers of additional patients added at each round of data collection.

Publication frequency

Every 1-4 years (latest report delayed due staff being reassigned to COVID-19 work). Reports published on website, see www.hcvdatabase.ie

Accessing data

Web-based database accessible only through the government virtual private network (VPN). Username and password required. Reports published on website, see www.hcvdatabase.ie.
Data requests can be submitted by email to hcvdatabase@hpsc.ie and will be assessed on a case-by-case basis.

Open data portal access

No.

Email contact
Telephone contact