Using patient data to help improve fertility treatment
What changed?
Allowing researchers access to patient information
From October 2009 new legislation allows the HFEA to release identifying information about a patients’ treatment to researchers. Information on treatments carried out after 1 October can only be disclosed with the patient’s consent. Patient’s who have received treatment before then will be able to ‘opt-out’. Patients could also later withdraw or change their consent.
This data could be used to provide both medical and non-medical researchers with unique and vital information. This will, for instance, allow them to study the health and wellbeing of mothers and children born after treatment.
From April 2010, researchers will be entitled to apply for access to old Register data collected between August 1991 and September 2009. This will be facilitated by the coming into force of new Regulations that the Government will be laying before Parliament in Autumn 2009.
Treatment involving donated sperm or eggs
Donors or people being treated using donated sperm, eggs or embryos will not be asked to provide consent to releasing their data held by the HFEA for research purposes.
The new legislation doesn’t allow donors or donor-conceived children to be identified as these are considered to be special categories where confidentiality should remain.
Changes to Patient and Partner Registration Forms
As part of this change, we now need to record consent for release of identifiable details to researchers on the registration forms from 1 October 2009.
New Register Data Forms
In line with requirements of the Act and to streamline the import and export process there are three new Register data forms that came into effect on 1 October 2009.
- Embryo & Gamete Movement In form (GI) - PDF
Use when embryos, eggs or donor sperm come into storage at your centre either from abroad or from another UK centre. - Embryo & Gamete Movement Out Form (GO) - PDF
Use when embryos, eggs or donor sperm are removed from storage at your centre. This form records not only removal from storage for export or transfer to another UK centre but also for destruction, donation to research or thawed and found not to be viable.
These forms will replace four of the current paper import and export forms so the new register forms should reduce the workload when your centre moves embryos or gametes under General or Special Directions.
Currently you will still need to apply for Special Directions in the usual manner but we hope to streamline this process in the near future. - Donor Sperm Procurement Form (SP) - PDF
Use to record the amount of donor sperm stored at your centre.
Get ready
- From October 2009 new legislation will allow the HFEA to release identifying information about a patients’ treatment to researchers.
- New register data forms will come into force on 1 October 2009.
When did it change?
1 October 2009. Centres using their own patient management system are responsible for ensuring that their system is ready to submit these forms from that date.
Find out more
Page last updated: 20 August 2009
Email your questions to Richard Martin at