The Incidence of Cleft Lip and Palate Deformities in the South-East of Scotland (1971-1990)

It is now widely recognized that accurate record keeping and data collection is of paramount importance in the running of Health Services. This is particularly true in the planning and development of service provision and resource allocation, as well as clinical audit and research. The recording and documentation of cleft lip and palate deformities in the UK has historically been voluntary, and carried out by the Office of National Statistics (ONS), formally known as the Office of Population Censuses & Surveys (OPCS), in England and Wales, and in Scotland by the Information and Statistics Division NHS in Scotland. The Clinical Standards Advisory Group (CSAG) report into cleft lip and palate services in the UK has stated its concerns relating to the accuracy of this data. Regional data bases as described by Greg et al. (1994), Luther and Cook (1994), and the Scottish Cleft Lip and Palate Group (SCALP), have set the standard for data collection in the 1990s. CARE was initially set-up by the Craniofacial Society in 1989 as an additional voluntary register of cleft birth data nationally. This proved less reliable than the ONS data initially. However, in 1995, regional cleft co-ordinators were introduced to improve the system of collection (personal communication). Registrations have subsequently improved dramatically. However, a few units still prefer not to inform this group of their cleft birth data. National registration systems for cleft anomalies are not new. In Denmark, the government introduced compulsory recording of children with facial clefts in 1937 (Bixler et al., 1971). Norway established a medical register of births, including information on congenital malformations in 1967. A European initiative, EUROCAT, was established in 1979 (European Registration of Congenital Anomalies). This was supported by the European Commission with the aim of improving the methodology for population studies throughout the community. Initially, EUROCAT was setup as a feasibility study to test the ability of pooling data across national boundaries. By 1991, as a result of its success, it is no longer supported as a research project, but as a fully funded service in its own right. Studies in Denmark by Jensen et al. (1988) have demonstrated an increased incidence of cleft births between 1942 and 1981. Between 1938 and 1942 there were 1·5 per 1000 births, which increased to 1·89 per 1000 births between 1978 and 1981. Similar increases have been reported by Rintala (1986), and Srivastava and Bang (1990) in Finland and Kuwait, respectively. No such increases have been reported in UK studies. This demonstrates the importance of having base-line values easily available to determine any change in incidence. Since 1989, the Edinburgh cleft unit has been participating in the Scottish Cleft Lip and Palate Project (SCALP). This is a voluntary system for collecting standardized data on all cleft lip and/or palate infants born in Scotland. No accurate cleft data was available prior to this date in an easily accessible form. The Incidence of Cleft Lip and Palate Deformities in the South-east of Scotland (1971–1990)