Abstract
The United Kingdom Congenital Malformations Notification Scheme began in 1964. It is based on notes added to birth notification forms. In Birmingham, a local scheme based on multiple sources has been run in parallel for the last 20 years. The national notification scheme records malformations noted up to the age of 7 days, whereas the Birmingham scheme collects information up to the age of 5 years. A case by case record linkage of the two registers was carried out. This operation revealed the essential completeness of the multiple-source register but gross defects among notifications. The extent and nature of the deficiencies are described. They include defects of ascertainment of malformed infants and of major additional malformations in those infants who are in fact notified, overnotification of infants without significant malformations, and misclassification of the major malformations that were, in fact, notified. The defects arise partly from the defective design of the national scheme and partly from defective implementation and a lack of designated supervisory responsibilities. The main requirements for a scheme that could indeed be relied upon to meet its monitoring objectives are set out.
Full text
PDF
Selected References
These references are in PubMed. This may not be the complete list of references from this article.
- Bower C., Stanley F. J. Western Australian Congenital Malformations Register. Med J Aust. 1983 Aug 20;2(4):189–191. doi: 10.5694/j.1326-5377.1983.tb122403.x. [DOI] [PubMed] [Google Scholar]
- Cole S. K. Evaluation of a neonatal discharge record as a monitor of congenital malformations. Community Med. 1983 Feb;5(1):21–30. doi: 10.1007/BF02548580. [DOI] [PubMed] [Google Scholar]
- Edmonds L. D., Layde P. M., James L. M., Flynt J. W., Erickson J. D., Oakley G. P., Jr Congenital malformations surveillance: two American systems. Int J Epidemiol. 1981 Sep;10(3):247–252. doi: 10.1093/ije/10.3.247. [DOI] [PubMed] [Google Scholar]
- Ericson A., Källén B., Winberg J. Surveillance of malformations at birth: a comparison of two record systems run in parallel. Int J Epidemiol. 1977 Mar;6(1):35–41. doi: 10.1093/ije/6.1.35. [DOI] [PubMed] [Google Scholar]
- Foster F. H. Congenital anomaly monitoring in New Zealand, 1979-81. N Z Med J. 1982 Nov 10;95(719):780–781. [PubMed] [Google Scholar]
- Källén B., Winberg J. A Swedish register of congenital malformations. Experience with continuous registration during 2 years with special reference to multiple malformations. Pediatrics. 1968 Apr;41(4):765–776. [PubMed] [Google Scholar]
- Källén B., Winberg J. Dealing with suspicions of malformation frequency increase. Experience with the Swedish register of congenital malformations. Acta Paediatr Scand Suppl. 1979;275:66–74. doi: 10.1111/j.1651-2227.1979.tb06163.x. [DOI] [PubMed] [Google Scholar]
- Leck I., Record R. G., McKeown T., Edwards J. H. The incidence of malformations in Birmingham, England, 1950-1959. Teratology. 1968 Aug;1(3):263–280. doi: 10.1002/tera.1420010305. [DOI] [PubMed] [Google Scholar]
- Newcombe H. B. Pooled records from multiple sources for monitoring congenital anomalies. Br J Prev Soc Med. 1969 Nov;23(4):226–232. doi: 10.1136/jech.23.4.226. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Saxén L., Klemetti A. The Finnish register of congenital malformations. Acta Univ Carol Med Monogr. 1973;56:23–30. [PubMed] [Google Scholar]
- Seward J. F., Stanley F. J. Congenital malformations register in Western Australia. Med J Aust. 1981 Mar 7;1(5):218-9, 222-4. doi: 10.5694/j.1326-5377.1981.tb135506.x. [DOI] [PubMed] [Google Scholar]