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Applying to use our data for research

We hold the largest register of fertility treatment data in the world. World class research has been carried out using our data, either alone or by linking to other datasets. This page explains what data we hold and how you can access it for research purposes.

What data do you collect?

Fertility clinics submit data to us, which we hold in our Register. Data we collect includes:

  • identifying information such as name, date and place of birth of patients, their partner and any children born as a result of treatment
  • reasons for seeking treatment and obstetric history
  • the type of treatment being used, the number of eggs collected and the number of embryos transferred
  • the number of babies born, their gestation and birthweight.

What data can I apply to use?

There are two main types of data which can be used:

  • anonymised data, where no identifiers are present and some of the information is banded, or obscured, to protect patient privacy, and
  • patient-identifying data, where the data may be very detailed, or contain actual identifiers (eg, date and place of birth, names, address, place of treatment) allowing the records to be linked to another database.

Research can only take place within the strict confines of the law, which provides very strong protection of patient, donor and offspring confidentiality (stronger still than normal medical confidentiality).

Any (even inadvertent or indirect) disclosure that an individual’s information is contained on our Register is a criminal offence. 

How can I apply to use your anonymised data?

Researchers who aim to use data in our Register only and not to link subjects to other datasets can use an anonymised version of the data in our Register.

This anonymised data contains a large proportion of all the Register data going back to 1991, with the patient identifiers removed. You can access it on our website archive.

Research using anonymised data can still answer important questions, like which factors (patient, treatment type, technique used) influence treatment outcomes, or which indicators might suggest that a patient should have only one or two embryos transferred during treatment.

Recent research projects using anonymised data include:

What if I want anonymised data that’s not in the Register already?

We're not able to produce bespoke versions of the anonymised data with further information added (for instance a maternal identifier, or more granular data) as this increases the risk of patient identification.

If you would like to use an enhanced anonymous Register, you will need to apply for patient-identifying data.

How can I get patient-identifying data?

Under the legislation, there are strict conditions about when and how fertility patients’ personal information can be made available to researchers.

Research involving patient identifiers is always a last resort. It can only happen:

  • if the research is of high quality and has been approved by an ethics committee
  • if consent to disclosure cannot effectively be obtained from the patients
  • if the research cannot happen (not even in an amended form) with anonymised data.

Even if release is approved, it will only be:

  • for the smallest possible number of patients
  • for the smallest possible number of identifiers (eg, date of birth or name)
  • for the shortest time period possible (ie, identifiers have to be removed once data from our Register has been linked to another dataset).

To apply for access to patient-identifying data for medical research, you will need to go through the National Information Governance Board (NIGB) integrated research application system.

To apply for access to patient-identifying data for non-medical research, you’ll need to email us at enquiriesteam@hfea.gov.uk.

Our Register Research Panel decides whether your application is granted or refused.

Data about treatments that took place before 1 October 2009

Before 1 October 2009, patients were not asked whether they would consent to research that disclosed their personal information.

Parliament decided that, in exceptional circumstances, data should still be made available for high quality research under strict ethical oversight.

The identifying data of patients and their children is therefore included in the data available to researchers, unless the patient has opted out.

Data about treatments that took place after 1 October 2009

From 1 October 2009, patients who register for fertility treatment are asked whether they consent to their information being included in studies that need patient identifiers. Patients are also asked whether they would be happy to take part in research involving contact research.

A patient’s consent (or refusal) given after 1 October 2009 also applies to any treatment they might have had before that date.

If you apply for identifying data on treatments after October 2009, you will only have access to those where consent has been given.

The consent rate has been between 30% and 50% since 2009 so the dataset is much smaller than the pre-October 2009 version. You should consider the impact this may have on your analysis before applying.

Recent research projects using patient-identifying data include:

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Review date: 24 August 2019