Version: 1.0.0 | Published: 6 Jan 2025 | Updated: 479 days ago
Documentation
Associated Media:
Description:
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:
- Research and Data page(https://www.hfea.gov.uk/about-us/publications/research-and-data/)
- HFEA dashboard (https://www.hfea.gov.uk/about-us/hfea-dashboard/)
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.
Coverage
Spatial:
United Kingdom
Follow Up:
Other
Pathway:
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.
Provenance
Origin
Purposes:
- Statutory
- Audit
Sources:
- EPR
- Paper-based
Collection Situations:
Clinic
Temporal
Accrual Periodicity:
Other
Start Date:
01 August 1991
Time Lag:
Variable
Accessibility
Access
Access Rights:
Access Service:
Access Request Cost:
£5000
Delivery Lead Time:
Variable
Jurisdictions:
UK
Data Controller:
Human Fertilisation and Embryology Authority
Data Processor:
Human Fertilisation and Embryology Authority
Usage
Data Use Limitations:
Research use only
Data Use Requirements:
- Geographical restrictions
- Ethics approval required
- Project-specific restrictions
Resource Creators:
Human Fertilisation and Embryology Authority
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Conforms To:
LOCAL
Languages:
en
Formats:
text/tab-separated-values
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Events
Total cycles between 1991 and 2023
2008365
Fertility treatment cycles
31 December 2023
Persons
Total patients between 1991 and 2023
732125
Distinct patients
31 December 2023