HL Deb 25 March 2002 vol 633 cc11-2WA
Lord Alton of Liverpool

asked Her Majesty's Government:

What efforts have been made to ensure that the Office for National Statistics complies accurate figures on the number of babies born with birth defects [HL3457]

Lord McIntosh of Haringey

The information requested falls within the responsibility of the National Statistician, who has been asked to reply.

Letter from the National Statistician, Len Cook, dated March 2002.

As National Statistician I have been asked to reply to your recent question on what efforts have been made to ensure the compilation of accurate figures on the number of babies born with birth defects. [HL3457]

The Office for National Statistics (ONS) collects information on live born babies and stillbirths with congenital anomalies through the National Congenital Anomaly System (NCAS). This system has been monitoring congenital anomalies in England and Wales since 1964. Its primary purpose is to detect changes in the frequency of reporting of congenital anomalies rather than to estimate exact prevalence at birth.

Reporting to NCAS is voluntary, and it has long been recognised that there is under-notification. A review in 1995 recommended that where good congenital anomaly registers existed outside ONS, information should be exchanged with these to improve the completeness and validity of both local and national data. ONS began data exchange in 1998 and now receives high quality data from Wales and three English regions where there are local registers. These registers obtain details of cases from a wide variety of sources before sending the notifications on to ONS. These registers cover all births in Wales and 23 per cent of births in England. Reports for the remainder of England are sent directly to ONS by NHS Trusts.

In January 2002 two further local registers began providing information to NCAS. ONS is also currently working with national condition-specific registers where these exist, to improve notification levels. These improvements in the notification system have increased the numbers of babies with congenital anomalies reported. The recent increases in National Statistics' numbers of congenital anomaly notifications have all coincided with the timing and location of these improvements.