Prevalence of hypospadias in the same geographic region as ascertained by three different registries

Abstract

Hypospadias birth prevalence may be increasing with maternal exposure to endocrine disrupters. Yet hypospadias registers are hindered by data quality concerns. We compare the birth prevalence per thousand male births (BP) and ascertainment of hypospadias in the South East of England between 1st January 1997 to 31st September 1998 in a population-based hypospadias case register (surgeons' register) 731 cases, BP 3.8, (95% confidence interval 3.7-3.9), the National Congenital Anomaly System (NCAS) 645 cases (88% of surgeons' register), BP 3.4, (95% confidence interval 3.29-3.5) and Hospital Episode Statistics (HES) 221 cases (30% of the surgeons register), BP 1.15 (95% confidence interval 1.1-1.2). There were 191,438 male births (National Statistics). We found considerable differences in birth prevalence estimates and ascertainment according to data source. Compared with the Surgeons' register, the HES under-ascertainment of 10% was possibly explained by procedural weaknesses. NCAS's 70% under-ascertainment is explained by exclusion of so-called mild hypospadias (since 1990). This exclusion does not appear warranted since mild and severe hypospadias probably share aetiology and all require surgery. NCAR's utility could be improved if it returned to including "minor" hypospadias. Meanwhile routine data such as HES are potentially suitable for surveillance of this condition.

Epidemiology of hypospadias in Europe: a registry-based study

“…Ascertainment of hypospadias is incomplete in some registries, and this has a large effect on the prevalence of hypospadias, thus hindering the evaluation of trends. Ascertainment depends on the sources of information that registries can access (e.g., if only surgical data are available, mild cases can be missed), how cases are notified to the registry (active versus passive notification), jurisdiction (data protection issues), differences in diagnostic methods, screening or treatment per country (mild cases might not be diagnosed), and variation in the follow-up period of cases (when follow-up is short, mild hypospadias may not yet have been diagnosed, or a preputial anomaly can be misdiagnosed as hypospadias) [ 7 , 16 , 24 , 25 ]. The low hypospadias prevalence in South Portugal (5.10/10,000 births) is largely due to incomplete ascertainment, as ascertainment of all congenital anomalies is low in this registry [ 26 ].…”

Potential of general practice data for congenital anomaly research: Comparison with registry data in the united kingdom

“…Genital anomalies were also higher in THIN than in EUROCAT, and there is already evidence to suggest that differences in the diagnostic criteria used for hypospadias may lead to more cases that EUROCAT would classify as minor (mild hypospadias) being classified as major anomalies and thus appear overrecorded in some data sources in comparison to EUROCAT (Neeli and Nerli, ). The classification of hypospadias as major or minor anomalies remains controversial as was shown in a comparison of EUROCAT CA registry data with surgeons' registers were only 30% of cases requiring surgery were actually included in EUROCAT (Nelson et al, ). Researchers and surgeons have argued that, as all hypospadias cases are likely to share the same etiology and many require surgery, classification should not distinguish between major and minor cases (Nelson et al, ).…”

Endocrine Disruptors in the Workplace, Hair Spray, Folate Supplementation, and Risk of Hypospadias: Case–Control Study

“…Most previous studies of hypospadias have relied on routinely collected registry data with limited information on potential risk factors and confounders, and varying levels of quality control and completeness (Aho et al 2003; Irgens 2000; Kallen 1988; Kallen et al 1986; Kristensen et al 1997; Vrijheid et al 2003). We ascertained slightly more cases than the hospital registries and many more cases than the national congenital anomalies system (Nelson et al 2007). Our study also has limitations.…”