An Audit of the Yorkshire Regional Cleft Database

Orofacial clefts are comprised of a range of anomalies: clefts of the lip/alveolus (CL), clefts of the lip and palate (CLP), and isolated cleft palate (CP). The former two subtypes are often grouped together as cleft lip with or without cleft palate [CL(P)]. Statistics on the prevalence of these clefts and their clinical outcome are essential for the progress of research, clinical audit, and for the planning of clinical services and specialist training (Sandy et al., 1998; Hammond and Stassen, 1999). Therefore, it is important that such statistics are based on valid and accurate data. These data are collated at a variety of levels ranging from individual units’ records to national registers. Regional databases of orofacial cleft cases have existed in several parts of the United Kingdom (UK) since the 1980s (Gregg et al., 1994; Luther and Cook, 1994; Bellis and Wohlgemuth, 1999). Furthermore, a national data registry, covering England and Wales, was established in 1982 under the auspices of the Craniofacial Society of Great Britain (Hammond and Stassen, 1999). This database subsequently became known as the Craniofacial Anomalies Register (CARE). However, since the registration of patients has been voluntary, either incomplete or no data has been provided by many of the units involved in cleft care. In the UK, data on congenital anomalies is also collected by a government agency, the Office for National Statistics (ONS), and by centres participating in the European Registration of Congenital Anomalies (EUROCAT) initiative. The ONS collects data from health authorities and local clinicians involved in the neonatal period.These figures are pooled with other data sources, e.g. CARE, via the British Isles Network of Congenital Anomaly Registers. Again, these registers receive orofacial cleft reports on a voluntary basis. As such, there is no robust estimate of the UK birth prevalence of orofacial cleft anomalies. Recently, the process of data collection has received fresh impetus with the compilation and publication of the Clinical Standards Advisory Group (CSAG) Report (1998) on the management of cleft anomalies in the UK. In particular, the implementation of this report’s recommendations requires accurate data on the regional and subtype prevalences of orofacial clefts in order to forecast the service provision, workloads, and specialist staff and facility requirements of prospective cleft centres. For example, children born with isolated CL anomalies will not require secondary palate surgery nor speech therapy, whereas primary lip repair and alveolar bone graft surgeries are not necessary in isolated CP cases. The Yorkshire cleft database was established in 1990 following a successful pilot study and audit (Luther and Cook, 1994). This database is compiled in the Orthodontic Department of the Leeds Dental Institute, and covers the North and West Yorkshire areas (except the Northallerton Health District). Reporting of cleft births occurs on a voluntary basis, though compliance is actively encouraged by the regional cleft (CARE) co-ordinator. Ideally, a CARE registration form is completed in the immediate post-natal period by a consultant or specialist registrar in Orthodontics, and forwarded to the co-ordinator to be entered on the database. Currently, there are four cleft units within this large but geographically defined area. Since this Yorkshire cleft database is used as a source of regional and national data it was decided to test its validity by comparing its figures with those of a locally-collated ascertainment source. Arguably, population ascertainment from maternity hospital records may be inclusive of all live births and anomalies,but this source would not be without its practical difficulties and deficits, e.g. insufficient staff involvement, home births, and undiagnosed CP and small defects. The use of regional health authority records, collated using hospital operation codes, was also considered. However, a preliminary assessAn Audit of the Yorkshire Regional Cleft Database