Greg Mulholland (Shadow Minister, Health; Leeds North West, Liberal Democrat)
Kevin Brennan (Parliamentary Secretary, Cabinet Office; Cardiff West, Labour)
I have been asked to reply.
The information requested falls within the responsibility of the UK Statistics Authority. I have asked the authority to reply.
Letter from Karen Dunnell, dated
As National Statistician, I have been asked to reply to your recent question asking how many children have been born with (a) Down's Syndrome and (b) Fragile X Syndrome in each of the last 30 years. (244804)
The table attached provides the number of live and stillbirths notified to the National Congenital Anomaly System for England and Wales (NCAS) with a mention of (a) Down's Syndrome and (b) Fragile X Syndrome for the last 30 years. Figures for Fragile X Syndrome are not available prior to 1995.
The number of notifications received by NCAS is likely to be less than the actual number of infants born with an anomaly. The level of under-reporting would be higher for anomalies which are not readily apparent at birth, such as Fragile X Syndrome, than for those which are easier to diagnose, such as Down's Syndrome.
NHS Trusts provide these notifications to NCAS on a voluntary basis, either on forms sent to the Office for National Statistics shortly after the birth or via local congenital anomaly registers. The recording of congenital anomalies is more complete in those areas where a register operates, because the register can obtain additional information locally later. Consequently, the figures for congenital anomalies are presented separately for areas where a register operated and for areas without a register in a particular year. While a few of these local congenital anomaly registers were already established in 1998, others were set up as late as 2003. In 2006, registers covered 43 per cent of births in England and all births in Wales.
|Table 1: Number of notifications to the National Congenital Anomaly System with a mention of (a) Down's Syndrome( 1) and (b) Fragile X Syndrome( 1, 2) 1977 to 2006 England and Wales( 3)|
|Down's Syndrome||Fragile X Syndrome|
|Percentage of births covered by a register( 3)||Register areas||Non register areas||Total||Register areas||Non register areas||Total|
|(1) The table includes notifications between 1995 and 2006 coded to (a) Q90 and (b) Q99.2 using the International Classification of Diseases, Tenth Edition (ICD-10). Figures for 1995 onwards are based on data on NCAS on 17 October 2007. Figures for Down's Syndrome for earlier years are taken from previous publications—notifications between 1979 and 1994 were coded to 758.0 (ICD-9). |
(2) Figures for Fragile X are not available before 1995. Figures for notifications in register areas in 1998 and 1999 are omitted because they would be based on data from only two registers.
(3) Births to women resident in England and Wales.