Under-reporting of major birth defects in Northwest Russia: a registry-based study

Anton A Kovalenko,Tormod Brenn,Jon Øyvind Odland,Evert Nieboer,Alexandra Krettek,Erik Eik Anda

doi:10.1080/22423982.2017.1366785

Abstract

ABSTRACTThe objective was to assess the prevalence of selected major birth defects, based on data from two medical registries in Murmansk County, and compare the observed rates with those available for Norway and Arkhangelsk County, Northwest Russia. It included all newborns (≥22 completed weeks of gestation) registered in the Murmansk County Birth Registry (MCBR) and born between 1 January 2006 and 31 December 2009 (n=35,417). The infants were followed-up post-partum for 2 years through direct linkage to the Murmansk Regional Congenital Defects Registry (MRCDR). Birth defects identified and confirmed in both registries constituted the “cases” and corresponded to one or more of the 21 birth defect types reportable to health authorities in Moscow. The overall prevalence of major birth defects recorded in the MRCDR was 50/10,000 before linkage and 77/10,000 after linkage with the MCBR. Routine under-reporting to the MRCDR of 40% cases was evident. This study demonstrates that birth registry data improved case ascertainment and official prevalence assessments and reduced the potential of under-reporting by physicians. The direct linkage of the two registries revealed that hypospadias cases were the most prevalent among the major birth defects in Murmansk County.Abbreviations: ICD-10, International Classification of Diseases, 10th revision; MCBR, Murmansk County Birth Registry; MRCDR, Murmansk Regional Congenital Defects Registry; MGC, Murmansk Genetics Center

Highlights

Congenital anomalies are structural or functional anomalies that exist at or before birth, some become evident during infancy
We considered data on the 21 selected birth defects, namely those included in the mandatory Murmansk Regional Congenital Defects Registry (MRCDR) annual report to the health authorities in Moscow
We found that 79 of the 210 cases of major birth defects registered in the Murmansk County Birth Registry (MCBR) were not included in the MRCDR

Summary

Introduction

Congenital anomalies ( known as birth defects) are structural or functional anomalies that exist at or before birth, some become evident during infancy. Based on EUROCAT data, the total prevalence of all birth defects diagnosed at birth in Europe is about 2.5% [1] and its temporal prevalence is stable. Congenital anomalies have become the main cause of perinatal mortality as other causes of death have declined [2]. Each year an estimated 7.9 million babies are born with serious birth defects and approximately 50% of all congenital malformations do not have an identified cause. Exposure to viruses or bacteria, maternal diseases and exposure to chemicals have been associated with increased risk [3]. Some congenital birth defects are treatable (surgically or otherwise), annual estimates indicate that

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