To ask the Secretary of State for Health how many children have been born with (a) Down’s Syndrome and (b) Fragile X Syndrome in each of the last 30 years. (244804)

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 17 December 2008:

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.