HIV and AIDS New Diagnoses and Deaths (HANDD)
Guidance on the collection and reporting of data for new HIV diagnoses and deaths from specialist outpatient HIV clinics in the UK.
About
The HIV and AIDS New Diagnoses and Deaths (HANDD) system collates disaggregate epidemiological, demographic and clinical information on:
- all new HIV diagnoses
- first diagnoses of an AIDS-defining condition
- deaths among people diagnosed with HIV
This information is essential in describing the HIV epidemic in the UK.
Sources of data
Disaggregate, pseudonymised data for people diagnosed with HIV and aged 15 years and over in England, Wales and Northern Ireland is collected on a voluntary basis from laboratories, sexual health clinics, general practice and other services where HIV testing takes place (see How to submit HANDD data below). While laboratories provide the initial information relating to HIV diagnoses, subsequent clinician reports provide more detailed epidemiological information essential in describing the HIV epidemic.
Once a year, data from other sources (see details below) is combined with the HANDD reports for England, Wales and Northern Ireland to create a HANDD data set for the UK. Records are de-duplicated to ensure that a person who reported has not been diagnosed previously and people living with HIV can be tracked between clinics and over time.
Additional data from HARS
All clinician reports of new HIV diagnoses or deaths in the UK collated in the HIV and AIDS Reporting System (HARS) database are subsequently imported into HANDD to supplement the HANDD data set with data for new HIV diagnoses and deaths for people in England (not already reported directly through the HANDD form) and in devolved countries.
Paediatric data
Paediatric data for new HIV diagnoses in England is collected separately by the Children’s HIV and AIDS Reporting System (CHARS) (on behalf of NHS England) and incorporated in HANDD.
Other sources of data
HANDD is supplemented with:
- data for Scotland reported by Public Health Scotland (PHS) directly
- data from the CD4 Surveillance Scheme
- data from the Recent HIV Infection Testing Algorithm (RITA) programme
- death certificate data from the Office for National Statistics (ONS) mortality register
- reviews of deaths among people with HIV from the National HIV Mortality Review (NHMR)
How to submit HANDD data
All clinics and laboratories are requested to download a new HIV diagnosis Excel reporting form. Once the form has been filled out with the records of all people newly diagnosed, sites are requested to submit the completed form to the UK Health Security Agency (UKHSA) via the HIV and STI Web Portal.
The criteria to report new HIV diagnoses or deaths are:
- new HIV diagnoses made at your clinic or laboratory
- transfers within the UK or from abroad (that is, people new to your site)
- deaths among people with HIV
Sites who report fewer than 10 cases each year are provided with the option to report via a Snap Survey form. This form only allows for one report to be made at a time, therefore sites with more than 10 cases a year are advised that the Excel form may be easier to complete.
When to submit HANDD data
New HIV diagnoses are reported to UKHSA on an annual basis. UKHSA contacts all sites at the beginning of January to request a report of all new HIV diagnoses and deaths among people with HIV. Sites are also encouraged to report transferred cases, but these are not mandatory.
To encourage sites to submit their data by the deadline, we use a 3-point contact follow up system:
- first contact: early January by email
- second contact: one month before the deadline by email
- final email or telephone call: one week before the date of the deadline
| Submission period | Reporting deadline |
|---|---|
| January to December 2025 | Monday 23 February 2026 |
| January to December 2026 | Monday 22 February 2027 |
| January to December 2027 | Monday 28 February 2028 |
| January to December 2028 | Monday 26 February 2029 |
| January to December 2029 | Monday 25 February 2030 |
In recent years, most new HIV diagnoses were reported via HARS. Since HARS only captures people who engage in HIV care, it is important that details of any people newly diagnosed but who did not transfer into specialist HIV care are captured and reported to UKHSA. To aid sites in reporting data, an extract of all newly diagnosed people is created for each site and sent in the spring, and contacts within the corresponding NHS trust are asked to complete any missing information, adding details for individuals who have not subsequently attended for HIV care. If in doubt, we recommend reporting all new HIV diagnoses using HANDD, as any duplicate cases will be identified through data linkage.
Where to access HANDD data
HANDD 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 HIV new diagnoses, AIDS-defining conditions and deaths among people with HIV is available in a variety of formats.
These official statistics present information on HIV testing, HIV pre- and post-exposure prophylaxis (HIV PrEP and HIV PEP, respectively), 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.
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
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.
HANDD data requests
HANDD and other HIV data may 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 HANDD or to request access to the HIV and STI Web Portal, please contact the HIV help desk at harsqueries@ukhsa.gov.uk