HIV and AIDS Reporting System: NHS Quarterly Data Collection Guidance

Guidance

HIV surveillance systems

Information about the collection and reporting of HIV data in the UK.

From: UK Health Security Agency Published 1 January 2008 Last updated 15 April 2026
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The HIV and AIDS Reporting System (HARS)

The HARS data set was developed by the UK Health Security Agency (UKHSA) (previously Public Health England) in conjunction with Department of Health and Social Care (DHSC) and the HIV Lead and Inform Clinical Reference Group (CRG). HARS is a consultation-based, disaggregate data set which is submitted on a quarterly basis, and reported by all NHS -funded outpatient HIV service providers in England.

The HARS data set is designed to:

• reduce the reporting burden for reporting sites
• increase the efficiency of HIV surveillance
• enhance standard HIV surveillance outputs
• produce quality of care indicators
• directly support commissioning services More information about HARS is available online.

HIV attendances data submitted to UKHSA for Scotland, Northern Ireland and Wales

For Scotland, Northern Ireland and Wales, HIV data is not provided in the HARS format. Data is submitted once a year in 2 different ways, one for Wales and Northern Ireland and the other for Scotland.

Data submitted to UKHSA for Scotland, Northern Ireland and Wales is linked to HARS data for England to create a UK database of HIV attendances that allows to plan services, monitor the quality of care received by people living with HIV and their clinical outcomes for the UK.

Wales and Northern Ireland

Once a year, Wales and Northern Ireland provide data to UKHSA in Survey of Prevalent HIV Infections Diagnosed (SOPHID) format.

SOPHID was a cross-sectional survey of all people living with diagnosed HIV and accessing HIV specialist care at NHS services in England, Wales and Northern Ireland that began in 1995. For England, SOPHID has been superseded by HARS. SOPHID data includes demographic characteristics and clinical information. Data is reported as one attendance per calendar year for all people receiving HIV outpatient care in NHS -funded clinics.

Scotland

For Scotland, Public Health Scotland (PHS) provides UKHSA with a bespoke submission of all HIV diagnoses and people in HIV care in Scotland once a year. The data collected includes demographics and key information relating to HIV diagnosis, treatment and clinical markers.

HIV and AIDS New Diagnoses Database (HANDD)

Reports of new HIV diagnoses, first AIDS diagnoses and deaths among people living with HIV are received from laboratories, sexual health services (SHSs), general practice and other services who do not submit data to HARS. This additional data contributes to understanding HIV transmission and is used to monitor probable route of exposure to HIV.

Data in HARS including data submitted to UKHSA for Wales, Northern Ireland and Scotland is linked to HANDD data to create a UK database of new HIV diagnoses and deaths.

More information about HANDD is available online.

Children’s HIV and AIDS Reporting System (CHARS)

CHARS, based at the Institute of Child Health (part of University College London (UCL)), collects ongoing clinical and other health information on children living with HIV in England on behalf of NHS England who commission the system.

The data collected includes demographics and key information relating to HIV diagnosis, treatment and clinical markers. In addition, data on children born to mothers with HIV, the vast majority of which will not acquire HIV through vertical transmission, is also reported in this data set.

Data from CHARS is sent to UKHSA once a year and linked to the HARS and HANDD data sets.

CD4 Surveillance Scheme

The CD4 Surveillance Scheme began in 1995 and monitors immunosuppression among adults living with a diagnosed HIV infection in England, Wales and Northern Ireland. Over 20 laboratories currently participate in the scheme. Data for Scotland is submitted by PHS separately once a year. The data from participating laboratories and from PHS is incorporated into HANDD.

The CD4 Surveillance Scheme data is used to calculate late HIV diagnoses, access to HIV care and the clinical outcomes of people living with HIV.

Recent Infection Testing Algorithm (RITA) programme

The RITA programme was introduced in 2009 in England, Northern Ireland, Scotland and Wales. It monitors the number of people who recently acquired HIV infection at the time of diagnosis.

Specimens from individuals newly diagnosed with HIV are sent by participating laboratories to the UKHSA Virus reference department for recent infection testing using the Limiting Antigen (LAg) avidity assay. The results of this biomarker assay are then linked to reports of new HIV diagnoses in HANDD. RITA testing covers just over 1 in 3 new diagnoses in the UK.

New HIV diagnoses with a normalised optical density less than or equal to 1.5 are classified as recently acquired or incident infections unless other clinical information indicates a longstanding infection such as a CD4 count less than 200 cells per cubic millimetre or the report of an AIDS -defining condition at diagnosis. In addition, cases are reclassified if the individual was on antiretroviral treatment before or at the time the sample was taken.

The RITA data is used to refine estimates of late diagnosis and help understand trends in HIV transmission. It is also used to monitor transmission of drug-resistant mutations in patients with recently acquired infection.

Office for National Statistics (ONS) mortality data

Once a year, ONS data is incorporated in the HANDD and HARS data sets (see above for more information on HANDD and HARS).

This data corresponds to ONS monthly reports of deaths in people with HIV as cause of death, provided by EDAP (Enterprise Data Analytics Platform), which manages UKHSA uses of ONS mortality data.

National HIV Mortality Review (NHMR)

NHMR was launched by UKHSA and the British HIV Association (BHIVA) to better recognise causes of death and preventable death, and to describe end-of-life care among people with HIV.

NHMR data is submitted to UKHSA for cleaning and analysis using a secure online form and includes comorbidities, treatment, clinical markers, causes of death, missed opportunities and end-of-life care.

An NHMR working group brings together regional representatives and specialists to review progress and findings from the reviews and to guide future development of the NHMR.

Deaths can be reported through the NHMR process throughout the year. Any deaths reported by end of March will be linked to HANDD included in the next official statistics publication the following autumn.

For further information on NHMR, please contact the HIV Mortality team at hivmortality@ukhsa.gov.uk

GUMCAD STI Surveillance System

GUMCAD is the mandatory surveillance system for sexually transmitted infections (STIs) and collects data on STI tests, diagnoses and services from all commissioned SHSs in England.

Data for HIV testing, HIV pre- and post-exposure prophylaxis (HIV PrEP and PEP, respectively) from GUMCAD is published in the HIV official statistics.

More information about the GUMCAD STI Surveillance System is available online.

Collaborations

Data from the national HIV surveillance systems is used to estimate the number of people living with undiagnosed HIV as well as incidence and diagnosis rates among gay and bisexual men.

This work is the result of a long-standing collaboration between UKHSA and the Medical Research Council Biostatistics Unit at the University of Cambridge. The collaboration is supported by partners at:

• the UCL Institute for Global Health
• the National Institute for Health and Care Research (NIHR) Health Protection Research Unit in Blood Borne and Sexually Transmitted Infections
• the NIHR Health Protection Research Unit in Evaluation and Behavioural Science

Multi-Parameter Evidence Synthesis (MPES) statistical model

MPES is a complex Bayesian statistical model that combines and triangulates multiple sources of data including census, surveillance and survey-type prevalence data to estimate HIV prevalence (diagnosed and undiagnosed). Information on exposure group sizes, numbers diagnosed and in care, HIV prevalence from prevalence surveys, and data on HIV testing in various groups are synthesised to estimate the number of persons living with undiagnosed HIV.

CD4-based back-calculation method

The CD4-based back-calculation model is a Bayesian statistical model which jointly estimates HIV incidence and diagnosis rates among gay and bisexual men from HIV and AIDS diagnosis data and CD4 cell count at diagnosis information. The model partitions undiagnosed infections into model states according to CD4 count and assumes known rates of disease progression in the absence of treatment. The model is fitted to observed data on the number of diagnoses and their CD4 count distribution, to estimate incidence and diagnosis rates.

Where to access HIV surveillance data

HIV surveillance data is subject to strict data sharing and publication rules (particularly regarding small numbers) that are outlined in the UKHSA HIV and STI data publication guidelines.

Information on the following is available in different formats:

• HIV tests
• access to HIV PEP and HIV PrEP
• new HIV diagnoses
• diagnoses of AIDS -defining conditions
• HIV treatment and care
• deaths among people with HIV HIV annual data tables

These official statistics present information on HIV testing, HIV PrEP and HIV PEP, new HIV and AIDS diagnoses and deaths in people with HIV, and on people accessing HIV services and treatment in the UK by demographic characteristics and geographical region.

Sexual and Reproductive Health Profiles

These provide local area data on sexual health, reproductive health and HIV diagnoses and services through interactive maps and charts.

HIV and STI Data Exchange

These are restricted-access reports for monitoring local, regional and national sexual health trends and are generally published once a year. They are accessible to registered NHS and local authority users only.

Sexual health, reproductive health and HIV in England: local and national data

This guide is to help local government, service providers and commissioners understand the sexual health, reproductive health data and HIV data available across England and how it can be accessed.

HIV data requests

HIV data can be requested by completing the HIV and AIDS reporting section data request form and sending this to HARSqueries@ukhsa.gov.uk

Data requests will be assessed with regards to the risks of deductive disclosure in accordance with the UKHSA HIV and STI data publication guidelines.

Data requests may take up to 20 working days for the response to be compiled (this may take longer during busy periods).

UKHSA sexual health and HIV privacy information

UKHSA ’s sexual health and HIV privacy information explains the depersonalised data we collect, how we use it and how we protect this information.

Contact information

For further information on HIV data or to request access to the HIV and STI Web Portal, please contact the HIV help desk at HARSqueries@ukhsa.gov.uk

Updates to this page

Published 1 January 2008 Last updated 15 April 2026 show all updates
1.
15 April 2026

Updated information about the collection and reporting of HIV data in the UK.
2.
1 January 2008

First published.

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