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National UK fertility register (HFEA Register)

Population Size

732,125

People

Population Size statistic card

Years

1991

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Geographic coverage statistic card

Lead time

Variable

Lead time statistic card

Summary

The HFEA Register records fertility treatment data submitted by the NHS and private UK licensed fertility clinics since 1991, including patient registration information and cycles of in vitro fertilisation (IVF), donor insemination and egg/sperm donation and egg or embryo storage.

Documentation

From the Human Fertilisation and Embryology Act 1990 Act, all NHS and private licensed fertility clinics in the UK are required by law to submit information on the treatments they carry out to the HFEA’s national fertility register. The HFEA holds information on fertility treatments, patients, partners, donors and children born as a result of these treatments in the UK on a secure database, which is believed to be the longest running national database of its kind in the world.

Person-level and cycle-level data can be available for research via the Register Research Panel (RRP). See further information at our data research webpage (https://www.hfea.gov.uk/about-us/data-research/) which includes guidance and relevant documentation for submitting an application.

You can find publicly available HFEA Register summary data at the following webpages:

In the HFEA Register, the term 'cycle' covers the range of reasons patients undergo fertility treatment, including IVF, fertility preservation and egg or sperm donation.

Dataset type

Health and disease, Registry

Dataset population size

732125

Associated media

https://www.hfea.gov.uk/about-us/data-research/

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Events

Total cycles between 1991 and 2023

2008365

Fertility treatment cycles

31 Dec 2023

Persons

Total patients between 1991 and 2023

732125

Distinct patients

31 Dec 2023

Provenance

Purpose of dataset collection

Statutory, Audit

Source of data extraction

EPR, Paper-based

Collection source setting

Clinic

Patient pathway description

The HFEA Register covers pathway from registration at a licensed fertility clinic to the outcome of each cycle, including stimulation, egg collection, storage, embryo transfer,

early outcome of treatment and outcome of pregnancy.

Data is typically available two years following the initial treatment

, this is due to requirements on submitting outcome information from the clinics following a birth and the time required to complete data validation exercises to confirm the accuracy of data with clinics.

Image contrast

No

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Other

Version

1.0.0

Modified

06/01/2025

Citation Requirements

Human Fertilisation and Embryology Authority

Coverage

Start date

01/08/1991

Time lag

Variable

Geographic coverage

United Kingdom

Follow-up

Other

Dataset completeness

https://www.hfea.gov.uk/about-us/hfea-dashboard/

Accessibility

Language

en

Alignment with standardised data models

LOCAL

Controlled vocabulary

LOCAL

Format

text/tab-separated-values

Data Access Request

Dataset pipeline status

Available

Access rights

https://www.hfea.gov.uk/about-us/data-research/

Time to dataset access

Variable

Access request cost

&ampamppound5000

Access method category

Varies based on project

Access service description

https://www.hfea.gov.uk/about-us/data-research/

Jurisdiction

UK

Data use limitation

Research use only

Data use requirements

Geographical restrictions,Ethics approval required,Project-specific restrictions

Data Controller

Human Fertilisation and Embryology Authority

Data Processor

Human Fertilisation and Embryology Authority

Investigations

https://www.hfea.gov.uk/about-us/data-research/

Enrichment and Linkage

Investigations

https://www.hfea.gov.uk/about-us/data-research/

Dataset Types: Health and disease, Registry

Dataset Sub-types: Reproductive, Births and deaths

Collection Sources: Clinic