HEFA-1999 Part 1/2nd proof - Human Fertilisation & Embryology ...

HUMAN FERTILISATION AND EMBRYOLOGY AUTHORITY
1999 ANNUAL REPORT & ACCOUNTS
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Collecting and
Providing Data
The HFEA has a statutory duty to collect information about licensed
treatments and their outcomes and maintains a register of information
compiled from data provided by licensed clinics. Information is
collected for the following main reasons:
• to provide information to children born as a result of such
treatments;
• to monitor the provision of treatments; and
• to assist in the provision of information to the Government,
patients, clinics and the general public.
DEVELOPMENT
OF THE HFEA’S
DATA REGISTER
The HFEA register began operating in 1991 and contains details of
licensed treatments and patient characteristics for the whole of the UK.
It is the largest database of its kind in the world. During April 1998 to
March 1999 details of 40,165 IVF and 9,625 DI treatment forms were
added to the register.
In 1998 the HFEA adopted a strategy for replacing the original register
system that had remained largely unchanged since its introduction. The
first phase, a series of consultations with interested parties about the
overall plans, began in June 1998. In mid 1999 the HFEA began to
introduce the new software to deal with treatments carried out from
April 1999 onwards.
In conjunction with this the HFEA will be introducing a system for
the secure electronic transfer of treatment data from clinics. It is hoped
that testing will shortly begin before the end of 1999 with a view to
phasing out paper based input from all but the smallest licensed centres
within five years.
In addition the HFEA has reviewed the provisions for archiving
records, and has introduced new methods and procedures for managing
this. It is intended that a system will be put in place for publishing
detailed, non-identifying data sets of treatments and their outcomes
during 2000. It is hoped that these data can be made available on the
HFEA’s website.
The following data tables and graphs present data collected for
treatment cycles that were carried out during the period 1 April 1997 to
31 March 1998. Unless otherwise stated, the IVF data include treatments
involving micromanipulation, such as ICSI or SUZI, and frozen embryo
replacements.
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