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26 November 2010

Summary of request

The Authority was asked for information about the overall UK outcomes for IVF and the proportion of children reported as having an abnormality at birth. 

HFEA response

This information can be found in the anonymised register, published on the HFEA’s website (see: http://www.hfea.gov.uk/5874.html).  As this information is reasonably accessible via the HFEA website, it is exempt from disclosure under section 21 FOIA and the request was, accordingly, refused.

Instructions for using the anonymised register data are provided on the relevant page of the Authority’s website.  The information sought may be obtained by applying filters to the data.  Information about observed anomalies reported to the HFEA may be found in the outcomes which are given for each fetal heart.  A value of 1 in the relevant column indicates an observed birth abnormality.   

This information is accurate up to 2007.  In October 2007 the Authority introduced new electronic outcome forms (‘Form O’).  Information regarding congenital abnormalities collected in section 13 of that form is not represented in the published anonymised register.  Full implementation of the new form took some time to accomplish: the previous form continued to be used by some centres until the second half of 2009.  Therefore some cycles reported in the anonymised register from October 2007 contain information about birth anomalies (i.e. where the old forms were used); however, where a new form has been used the value shown will always be ‘0’.   It is not possible to distinguish cases where the new and old forms were used using information contained in the anonymised register.  Information from section 13 of the new forms since they were introduced will be included in the next release of anonymised register data, which will contain verified outcomes up to the end of 2008.  The next release is scheduled for January 2009.

The information that we publish on our website is a snap shot of data provided to us by licensed centres at a particular time.  Before publication, we perform a preliminary validation process on the data and ask centres to confirm its accuracy, for which they remain responsible.  This information may, however, be subject to change as individual centres notify us of amendments.  For that reason a filter applied to the complete anonymised register (1991-2008) may return a slightly different answer than if that filter were applied to a particular year’s data.  Please note that 2008 data file currently contains only a half-year’s worth of data.  Data for more recent periods will be added once these have been subjected to the HFEAs’ verification procedures.  

Page last updated: 09 August 2012

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