The importance of the 60-year-old Hungarian Congenital Anomalies Registry today

  • Melinda Csáky-Szunyogh National Center for Public Health and Pharmacy, Hungary
Keywords: congenital anomaly, congenital abnormality, pathogenesis, surveillance, regional representation, anomaly prevention

Abstract

Congenital anomalies are conditions that develop during foetal life as a result of abnormalities in prenatal development, the majority of which are associated with severe morbidity, mortality, and lifelong functional impairment. In Hungary, a compulsory data collection system (which has been in place since 1962) registers a specific group of conditions that constitute a specific group of congenital malformations, classified by the International Classification of Diseases-10 in Chapter XVII. A significant number of congenital malformations are preventable. Still, prevention requires research of the changes in prevalence and causes, the publication of the results, the development of recommendations and measures and then the organisation and implementation of public health programs based upon these.
The Hungarian Congenital Anomalies Registry (HCAR) provides a good basis for studying trends in anomalies, early detection of adverse effects and evaluation of the results of foetal diagnostics. In this review, the rationale for the operation of the anomaly registries, the functions of the HCAR, and the value of its surveillance system will be described.

References

Bermejo-Sánchez, E., Botto, LD., Feldkamp, M. L., Groisman, B. & Mastroiacovo, P. (2018). Value of sharing and networking among birth defects surveillance programmes: an ICBDSR view. Journal of Community Genetics, 9, 411–415. https://doi.org/10.1007/s12687-018-0387-z

Centers for Disease Control and Prevention. (1988). Guidelines for Evaluating Surveillance Systems.

Christianson, A., Howson, C. & Modell, B. (2006). March of Dimes global report on birth defects: the hidden toll of dying and disabled children. The March of Dimes Birth Defects Foundation. https://www.prevencioncongenitas.org/wp-content/uploads/2017/02/Global-report-on-birth-defects-The-hidden-toll-ofdying-and-disabled-children-Full-report.pdf

Czeizel, E., Dénes, J. & Szabó, L. (1973). Veleszületett rendellenességek. Medicina Könyvkiadó.

Csáky-Szunyogh, M. & Formanek-Balku E. (2022). A Veleszületett Rendellenességek Országos Nyilvántartás 2010-2020. évek jelentett adatairól. https://www.nnk.gov.hu/attachments/article/2089/VRONY%20%C3%89ves%20Jelent%C3%A9s%202010_2020_v%C3%A9gleges.pdf

Csáky-Szunyogh, M., Horváth-Puhó, E., Pálffy, Gy. & Pataki, G. (2007). Módszertani útmutató a veleszületett fejlődési rendellenességek és kóroki monitor bejelentésének rendjéről. https://www.antsz.hu/data/cms30869/Koroki_Monitor_Modszertani_utmutato_070829.pdf

European Surveillance of Congenital Anomalies and European Project for Rare Diseases National Plans Development. (2012). Primary prevention of congenital anomalies. https://eu-rd-platform.jrc.ec.europa.eu/sites/default/files/EUROCAT-EUROPLAN-Primary-Preventions-Reccomendations.pdf

International Clearinghouse for Birth Defects Surveillance and Research. (2014). Annual Report. http://www.icbdsr.org/wp-content/annual_report/Report2014.pdf

Singh, P. K. (2023). World Birth Defects Day: Many birth defects, one voice. – World Health Organization Statement. https://www.who.int/southeastasia/news/detail/02-03-2023-world-birth-defects-day-manybirth-defects-one-voice

National Birth Defects Prevention Network (2004). Guidelines for Conducting Birth Defects Surveillance. https://www.nbdpn.org/docs/Full_SGSC_Manual_2021MARCH12.pdf

Országos Tisztifőorvosi Hivatal. (2016). Országos Tisztifőorvosi Hivatal által működtetett informatikai szakrendszerek, Veleszületett Rendellenességek elektronikus Országos Nyilvántartási szakrendszer (eVRONY) kiegészítve a pilot keretében megvalósult Elektronikus fotódokumentációs rendszerrel (eFOTO), Felhasználói Kézikönyv. https://www.antsz.hu/data/cms75367/eVRONY_eFOTO_Felhaszna_lo_i_ke_ziko_nyv_v1_3_20160419.pdf

RD-Action. (2017). Standard procedure and guide for the coding with Orphacodes. https://www.rd-action.eu/wp-content/uploads/2017/05/D5.2_Standard-procedure-and-guide_final.pdf

United Nations. (2015). Transforming our world: the 2030 Agenda for Sustainable Development. https://sdgs.un.org/2030agenda

World Health Assembly, 63. (‎2010)‎. Birth defects: report by the Secretariat. World Health Organization. https://iris.who.int/handle/10665/2378

Walani, S. R. & Biermann, J. (2017). March of Dimes Foundation: leading the way to birth defects prevention. Public Health Reviews, 38, 12. https://doi.org/10.1186/s40985-017-0058-3

Published
2023-12-20
How to Cite
Csáky-Szunyogh, M. (2023). The importance of the 60-year-old Hungarian Congenital Anomalies Registry today. Health Promotion, 64(3), 14-24. https://doi.org/10.24365/ef.12355
Section
Thematic collection