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Down's Syndrome

Volume 485: debated on Thursday 18 December 2008

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.

Table 1: Number of notifications to the National Congenital Anomaly System with a mention of (a) Down’s Syndrome1 and (b) Fragile X Syndrome1, 2 1977 to 2006 England and Wales3

Down’s Syndrome

Fragile X Syndrome

Percentage of births covered by a register3

Register areas

Non register areas

Total

Register areas

Non register areas

Total

1977

0

0

425

425

n/a

n/a

n/a

1978

0

0

444

444

n/a

n/a

n/a

1979

0

0

463

463

n/a

n/a

n/a

1980

0

0

481

481

n/a

n/a

n/a

1981

0

0

475

475

n/a

n/a

n/a

1982

0

0

527

527

n/a

n/a

n/a

1983

0

0

497

497

n/a

n/a

n/a

1984

0

0

505

505

n/a

n/a

n/a

1985

0

0

442

442

n/a

n/a

n/a

1986

0

0

445

445

n/a

n/a

n/a

1987

0

0

459

459

n/a

n/a

n/a

1988

0

0

428

428

n/a

n/a

n/a

1989

0

0

487

487

n/a

n/a

n/a

1990

0

0

415

415

n/a

n/a

n/a

1991

0

0

440

440

n/a

n/a

n/a

1992

0

0

394

394

n/a

n/a

n/a

1993

0

0

311

311

n/a

n/a

n/a

1994

0

0

316

316

n/a

n/a

n/a

1995

0

0

320

320

0

1

1

1996

0

0

357

357

0

3

3

1997

0

0

412

412

0

1

1

1998

5

38

419

457

n/a

n/a

1

1999

14

99

327

426

n/a

n/a

7

2000

27

167

244

411

2

0

2

2001

26

165

216

381

0

1

1

2002

32

165

192

357

2

0

2

2003

45

275

132

407

3

1

4

2004

48

361

112

473

2

0

2

2005

48

372

108

480

0

0

0

20064

44

309

109

418

0

0

0

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.

4 Figures for 2006 exclude data for some areas which used to be part of East Midlands and South Yorkshire congenital anomaly register.