Congenital Malformation Database (Hansard, 10 December 2002)

§ John Healey

I have been asked to reply.

The information requested falls within the responsibility of the National Statistician. I have asked him to reply.

Letter from L. Cook to Mr. L. Smith, dated 10 December 2002: As National Statistician I have been asked to reply to your parliamentary question on what research has been conducted into the United Kingdom congenital anomaly database since it was established. (84256) The National Congenital Anomaly System (NCAS) was set up in 1964 and only monitors congenital anomalies in England and Wales. Reporting to the system is voluntary and only live births and stillbirths are included. A number of articles and papers have been written using data from NCAS and on the quality of the data held on NCAS. Listed below are the articles using national data of which ONS are aware. Research using the National Congenital Anomaly System: Botting BJ. Limb reduction defects and coastal areas. Letter. Lancet, 1994; 343: 1033–1034. Botting B, Rosato M, Wood R. Teenage mothers and the health of their children. Popul Trends. 1998 Autumn;(93): 19–28 Busby A, Dolk H, Collin R, Barry Jones R, Winter R. Compiling a national register of babies born with anophthalmia/micropthalmia in England 1988–94. Arch Dis Child. Fetal Neonatal Ed 1998;79:F168–173 Doyle PE, Beral V, Botting B, Wale CJ. Congenital malformations in twins in England and Wales. J Epidemiol Community Health. 1991;45(1):43–8. Gilbert R. Clusters of anophthalmia in Britain. Difficult to implicate Benomyl on current evidence. BMJ 1993;307:340–341. Mastroiacovo P, Castilla E, Arpino C, Botting B, Cocchi G, Goujard J, Marinacci C, Merlob P, Metneki J, Mutchinick 0, Ritvanenen A, Rosano A. Congenital malformations in twins: an international study. Am J Med Genet 1999;83:117–124 Morris JK, Wald NJ. Quantifying the decline in the birth prevalence of neural tube defects in England and Wales. Journal of Medical Screening, 1999 6; 4:182–185 Murphy M, Seagroatt V, Hey K et al. Neural tube defects 1974–94 down but not out. Arch Dis Child 1996; 75: F133-F134 Office for National Statistics. Congenital anomaly statistics Series MBS. London: The Stationery Office Office for National Statistics. Health Statistics Quarterly no 4. Annual update: congenital anomaly statistics 1998 London: The Stationery Office, 1999 Office for National Statistics. Health Statistics Quarterly no 8. Annual update: congenital anomaly statistics 1999 London: The Stationery Office, 2000 Office for National Statistics. Health Statistics Quarterly no 12. Annual update: congenital anomaly statistics 2000 London: The Stationery Office, 2001 Office for National Statistics. Health Statistics Quarterly no 16. Annual update: congenital anomaly statistics 2001 London: The Stationery Office, 2002 Rogers SC, Weatherall JAC, OPCS, Anencephalus, spina bifida and congenital hydrocephalus. England and Wales 1964–1972. Studies on medical and population subjects. No 32 London: HMSO 1976: Rosano A, Smithells D, Cacciani L, Botting B, Castilla E, Cornel M, Erickson D, Goujard J, Irgens L, Merlob P, Robert E, Siffel C. Stoll C, Sumiyoshi Y. Time trends in neural tube defects prevalence in relation to preventive strategies: an international study. J Epidemiol Community Health. 1999 Oct;53(10):630–5 Smeeton NC, Rona RJ, Sharland G, Botting BJ, Barnett A, Dundas R. Estimating the prevalence of malformation of the heart in the first year of life using capture-recapture methods. Am J Epidemiol, 1999; 150 (7):778–785 Swerdlow AJ, Melzer D. The value of England and Wales congenital malformation notification scheme data for epidemiology: male genital tract malformations. J Epidemiol Community Health. 1988; 42(1):8–13. 290W Tan KH, Kilby MD. Whittle MJ, Beattie BR, Booth IW, Botting BJ. Congenital anterior abdominal wall defects in England and Wales 1987–93: retrospective analysis of OPCS data. BMJ. 1996 Oct 12;313(7062):903–6. Research into the quality of data on the National Congenital Anomaly System: Alberman E, Botting B. Recommendations for improving national data on congenital anomalies are being implemented. BMJ. 1997 Apr 26;314(7089):1278 Botting B. The impact of more complete data from Wales on the National Congenital Anomaly system. Health Statistics Quarterly 2000; 5: 7–9. Botting B. Improving the completeness of Down syndrome notification. Health Statistics Quarterly, 2000a ; 6: 14–17 Busby A, Dolk H, Collin R, Barry Jones R, Winter R. Compiling a national register of babies born with anophthalmia/micropthalmia in England 1988–94. Arch Dis Child. Fetal Neonatal Ed 1998;79:F168–173 Coleridge HL. The National Congenital Anomaly System-why it needs midwives' support. RCM Midwives J. 2002;5(5): 188–9 Cuckle H, Nanchahal K, Wald N. Birth prevalence of Down's syndrome in England and Wales. Prenatal Diagnosis 1991; 11: 29–34. Dutton SJ, Owens JR, Harris F. Ascertainment of congenital malformations: a comparative study of two systems. J Epidemiol Community Health 1991; 45: 294–298. Hey K, O'Donnell M, Murphy M, Jones N, Botting B, use of local neural tube defect registers to interpret national trends. Archives of disease in childhood. 1994; 71: F198-F202 Hill GB, Spicer CC Weatherall JAC The computer surveillance of congenital malformations. Br Med Bull 1968; 24 (3) :215–218 Huang T, Wall HC, Wald NJ, Morris JK, Mutton D, Alberman E. Reliability of statistics on Down's syndrome notifications. Journal of Medical Screening 1997; 4:95–97. Knox EG, Armstrong EH, Lancashire R. The quality of notification of congenital malformations. J Epidemiol Community Health 1984; 38: 296–305. Knox EG, Lancashire R. Epidemiology of congenital malformations. London: HMSO,1991. Morris JK, Wald NJ. Quantifying the decline in the birth prevalence of neural tube defects in England and Wales. Journal of Medical Screening, 1999 6; 4:182–185 Murphy M, Seagroatt V, Hey K el al. Neural tube defects 1974–94 down but not out Arch Dis Child 1996; 75: F133-F134 OPCS The OPCS Monitoring Scheme for Congenital Malformations—Occasional Paper 43- A review by a Working Group of the Registrar General's Medical Advisory Committee. London: OPCS 1995 Payne JN. Limitations of the OPCS congenital malformation notification systems illustrated by examination of congenital malformations of the cardiovascular systems in districts within the Trent region. Public Health 1992; 106: 437–448. Rahi JS, Botting B. Ascertainment of children with congenital cataract through the National Congenital Anomaly System in England and Wales. Br J Ophthalmol. 2001 Sep;85(9): 1049–51. Smeeton NC, Rona RJ, Sharland G, Botting BJ, Barnett A, Dundas R. Estimating the prevalence of malformation of the heart in the first year of life using capture-recapture methods. Am J Epidemiol, 1999; 150 (7): 778–785 Swerdlow AJ, Melzer D. The value of England and Wales congenital malformation notification scheme data for epidemiology: male genital tract malformations. J Epidemiol Community Health. 1988; 42(1): 8–13. Weatherall JAC. An assessment of the efficiency of notification of congenital malformations. The Medical Officer, 1969; 121:65–68 Weatherall JAC. Congenital malformations, surveillance and reporting. Population Trends 11, 1978, 27–29