Our role as an improved information provider

The HFEA holds a large amount of information about fertility treatments in the UK.

We hold this information on the HFEA Register which was set up by legislation and is the world’s largest national dataset about:

  • in vitro fertilisation and intra-cytoplasmic sperm injection, 
  • donor treatments and 
  • the storage of embryos, eggs and sperm.

The new HFE Act 2008 allows us to make this information more accessible; indeed we have found ways of going beyond what is required by statute. We are committed to being a proactive information provider to those interested in the UK fertility sector.

What is the HFEA Register?

The HFEA Register is the world’s largest national data set on regulated fertility treatments, including the handling and storage of embryos, eggs and sperm.

The information goes back to 1 August 1991 when the HFEA was created. Every time a patient starts regulated treatment (treatment involving the creation of embryos outside a woman’s body or the use of donated gametes), and at a number of stages throughout the treatment, clinics must by law provide information to us.

The Register contains all the children born as a result of regulated fertility treatment and provides those who are born as a result of donation with information about their donor.

Confidentiality
The confidentiality of the information held on the Register is very strictly protected by the HFE Act 1990 (as amended). This is why information from the Register could not very easily be used for research purposes.

The HFE Act 2008 has changed this situation and has made it easier to share some of this information, but only under tightly defined conditions.

 

Improving clinical practice, strengthening patient choice and serving those affected by donation

The information held in the HFEA Register can make a real difference to people.

We have:

  • Improved how we publish clinic information through our new enhanced Choose a Fertility Clinic. The new site presents and analyses data in a more meaningful and accessible way. This helps patients and those considering treatment to make informed decisions about their own treatment. 
  • Created a supportive and accessible framework for donors and the donor conceived to make use of new statutory access rights to the Register and improve our information for these groups.
  • Worked with experts to publish as much of our Register information that is possible and useful upfront. This includes an in depth analysis of the HFEA register information of 2006 (the last year for which we have verified information), and an anonymised version of 17 years of Register data.
  • Worked with the Department of Health and the National Information Governance Board (NIGB) in finalising how identifying register information can be made available to quality research, under strict ethical oversight.

    This is implementing legislation contained in the new HFE Act 1990 (as amended) which came into force on 1st October.

What changed on 1st October 2009?

On 1st October, and in the following weeks, we introduced a number of changes to how we publish and release information from the HFEA Register. Some of these were prompted by changes to the legislation governing the Register which come into force on 1st October.

The HFEA requested these changes to be made during the review of the existing legislation and welcomes this opportunity to ‘Open the register’.

More about the changes:

Changes to the information clinicians can share with each other and their administrators and support staff
Over the years, clinicians looking after fertility patients reported that at times the confidentiality restrictions contained in the HFE Act 1990 (as amended) got in the way of organising clinical practice in the best possible way.

The new legislation has made it is easier for clinicians to share the information that someone is a fertility patient with, for example, their administrative team or their finance office.

Where it is clinically important to do so, clinicians are now also more explicitly entitled to share relevant clinical information with other people who look after a fertility patient (for example when a patient has suspected OHSS and goes to hospital).

Patients are asked for their consent to this on the new CD consent form that came into force on 1st October.

 

Page last updated: 26 September 2009