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09 June 1998

Dear Colleague,

HFEA Register

As you may know, the Human Fertilisation and Embryology Act 1990 requires the HFEA to keep a Data Register of treatments and outcomes for a number of purposes being:

a)   to provide information to children born as a result of treatments;

b)   to monitor the provision of treatments; and

c)   to assist in the giving of information.

In order to make the Register more efficient and effective, the HFEA has recently reviewed its long-term strategy for its maintenance and use. It has decided that the Register's further development should have three main objectives as follows:

a)   to ensure that the continued accuracy of the information about patients, donors and partners provided by the clinics and held on the Register will enable the HFEA to answer questions from offspring;

b)   to make the transfer of data from licensed clinics to the HFEA simpler, more accurate and more economic, and

c)   to make the information held much more freely available subject to the requirements of confidentiality.

The HFEA intends to achieve these objectives in stages. This letter outlines the changes envisaged by the HFEA and the help which it needs from clinics to achieve its objectives.

Patient, donor and partner information

The HFEA anticipates introducing a patient, donor and partner registration form in April 1999. The advantage of such a form for clinics is that once it is in use, clinics will no longer need to repeat information about peoples' identities (other than a reference number) on each form sent to the HFEA. Clinics will be fully informed of the details of this form nearer to the time of its introduction. All other HFEA forms should remain unchanged.

The HFEA has considered how best to ensure that it can re-identify patients or donors in order to deal with questions from people who might have been born as a result of treatment. With this in mind, the HFEA during this summer hopes, with the cooperation of a number of clinics, to carry out pilot studies to see what identifiers clinics can most easily collect for both UK and non-UK nationals. Please indicate on the attached Register seminar invitation (returning the form by the 30th June) if your clinic would like to participate in such a pilot study. The HFEA hopes that all clinics asked to take part will feel able to do so.

Improving the transfer of data to the Register

 After April 1999 the HFEA hopes to begin moving towards a system of data submission from clinics using some form of electronic transfer - something a number of clinics have asked for in the past. The HFEA believes that such a system will be faster, more accurate and more economic for both clinics and the HFEA.

We have identified two possible ways in which this might be done:

• clinics could use their own systems which would need to be tested and certified by the HFEA;
• the HFEA would provide the necessary software.

In order to assess the likely workload and possible demand for an HFEA system, we need to know what systems clinics currently use and how these may change during the next few years. To help us do this a questionnaire is attached. To allow us to keep to our timetable, it would be appreciated if clinics could return this form to Allan Wright by the 15th July.  

Making information more freely available

The HFEA is aware that the information about treatments held in its database is unique. Therefore, once the new Register system is in place, it plans to develop a system for publishing non-identifying and impersonal information about treatments and outcomes. We expect that the data will be published in a number of standard formats and be freely available on the HFEA's web site.

If you have queries about any of the above, please do not hesitate to contact either Allan Wright or Richard Baranowski, on 0171 377 5077 extensions 206 or 228. Further, if there is demand, the HFEA will be happy to hold seminars for clinics on the Register, probably during late August. If desired, we expect that one will be held in London and other somewhere in the North of England. If you or members of your clinic would be interested in attending, please return the attached slip to us.

Yours sincerely,

Ruth Deech

Chairman

Page last updated: 14 April 2009

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