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

ABSTRACT

The 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

KEYWORDS:

• Birth defect
• birth registry
• linkage
• under-reporting

Acknowledgements

The authors thank the staff of the Murmansk County Birth Registry and the Murmansk Regional Congenital Defects Registry for their assistance in obtaining the data and for access to the core datasets. We would like to thank Trudy Perdrix-Thoma at Professional Standarts Editing, Inc. for excellent English language editing.

Availability of supporting data

The MCBR and MRCDR databases have restricted access due to privacy issues and patient confidentiality. Permission to use data requires the submission of an application. For access to the MCBR data, permission of both the Ministry of Health Care of the Murmansk Region and the UiT Arctic University of Norway is required. For the MRCDR data, access requires permission of the Ministry of Health Care of the Murmansk Region.

Consent for publication

Not applicable.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work received financial support from the Norwegian Ministry of Foreign Affairs, RER-09/126 and Agreement of Collaboration ref #160118 between the Northern State Medical University (NSMU), Arkhangelsk, Russia and UiT The Arctic University of Norway (UiT), Tromso, Norway.

Notes on contributors

Anton A. Kovalenko

AAK designed the study, collected the data, performed statistical analysis and wrote the manuscript. EEA participated in the design and coordination of the study, critically revised the manuscript and, together with JOO, EN and AAK, pioneered the setting up of the MCBR. TB, JOO, AK and EN helped in the drafting/editing of the manuscript. All authors read and approved the final manuscript.