Access anonymised HFEA data

Since the HFEA was set up in 1991 we have collected a vast amount of data on fertility treatments carried out by licensed UK clinics. The data is stored on what we call the HFEA Register.

In order to allow professionals in the sector and the wider research community to make good use of the data, we have launched an anonymised version of the Register.

The anonymised Register allows researchers to access a large and rich data set, but one that does not identify any patients, or children born as a result of treatment.

 

Why have we created the anonymised Register?

The Act of Parliament that set up the HFEA places tight restrictions on who can see the information we hold.

Unless the patient concerned has given their consent, we cannot release information that might lead to the identification of that patient, their partner or their child. However, we can publish anonymised information.

 

What information is in the Register?

The anonymised Register contains information, shown on a treatment cycle basis, such as:

  • reasons for infertility
  • the age of patients at treatment
  • number of embryos transferred

This is the first edition of the anonymised register, and it will be updated with the latest figures on a quarterly basis. We also hope to add further data fields over time.

When data is reported by clinics to the HFEA, it goes through a validation processes. Every attempt is made to ensure that the data is as accurate as possible. However, between 1991 and 2006 the data received was added to the Register manually which inevitably introduced human errors. Data has been supplied electronically by clinics since 2007.

 

We have excluded from the anonymised Register anomalies in the data that are misleading or could be misinterpreted.

Who is the anonymised Register for?

The anonymised Register is designed for those working in the IVF sector and professional researchers, or research organisations, with an interest in the epidemiology of fertility treatment.

If you are considering fertility treatment and want to see the latest information about each licensed UK fertility clinic, visit our Choose a Fertility Clinic service:

Accessing the anonymised Register

To find out what software you need, and how you can sort the data in a way that suits your needs, see our anonymised Register user guide:

Note: The user guide will be updated shortly to reflect the v.1.1 release.

The annonymised Register is available to download as .zip files. Download our data by year, or the entire data set.

  • 1991 (.zip 185 Kb v1.1)
  • 1992 (.zip 521 Kb v1.1)
  • 1993 (.zip 582 Kb v1.1)
  • 1994 (.zip 625 Kb v1.1)
  • 1995 (.zip 694 Kb v1.1)
  • 1996 (.zip 744 Kb v1.1)
  • 1997 (.zip 764 Kb v1.1)
  • 1998 (.zip 793 Kb v1.1)
  • 1999 (.zip 870 Kb v1.1)
  • 2000 (.zip 865 Kb v1.1)
  • 2001 (.zip 869 Kb v1.1)

 

 

 

 

 

 

 

 

 

 

 

 

 

Keep up to date

If you'd like to receive email notifications whenever the anonymised Register is updated, enter your email address in the form below.

Data protection

The HFEA will process the data that you supply only for the purposes of providing you with updates about the HFEA's anonymised register and supporting you regarding the use of that register. For more information about the HFEA's data protection policies, or to inform us that you no longer wish to be contacted about the anonymised register, contact dataprotection@hfea.gov.uk.

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Accessing patient-identifying information

In 2008, legislation was passed that allowed researchers access to patient-identifying information from our Register, if there is consent from the patient.

Strict procedures are in place regarding the supply of identifying data to researchers. It is expected that the majority of research projects will only need access to anonymised data. Access to identifying information is a last resort.

Page last updated: 20 December 2013

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