Prevalence of congenital heart defects in Europe, 2008-2015: A registry-based study

Chrysovalanto Mamasoula; Marie-Claude Addor; Clara Cavero Carbonell; Carlos M Dias; Luis-Javier Echevarría-González-de-Garibay; Miriam Gatt; Babak Khoshnood; Kari Klungsoyr; Kay Randall; Sylvia Stoianova; Martin Haeusler; Vera Nelen; Amanda J Neville; Isabelle Perthus; Anna Pierini; Bénédicte Bertaut-Nativel; Anke Rissmann; Florence Rouget; Bruno Schaub; David Tucker; Diana Wellesley; Natalya Zymak-Zakutnia; Ingeborg Barisic; Hermien E K de Walle; Monica Lanzoni; Carmel Mullaney; Lindsay Pennington; Judith Rankin

doi:10.1002/bdr2.2117

Prevalence of congenital heart defects in Europe, 2008-2015: A registry-based study

Birth Defects Res. 2022 Dec 1;114(20):1404-1416. doi: 10.1002/bdr2.2117. Epub 2022 Nov 8.

Authors

Chrysovalanto Mamasoula¹, Marie-Claude Addor², Clara Cavero Carbonell³, Carlos M Dias⁴, Luis-Javier Echevarría-González-de-Garibay⁵, Miriam Gatt⁶, Babak Khoshnood⁷, Kari Klungsoyr^{8

9}, Kay Randall¹⁰, Sylvia Stoianova¹¹, Martin Haeusler¹², Vera Nelen¹³, Amanda J Neville¹⁴, Isabelle Perthus¹⁵, Anna Pierini¹⁶, Bénédicte Bertaut-Nativel¹⁷, Anke Rissmann¹⁸, Florence Rouget¹⁹, Bruno Schaub²⁰, David Tucker²¹, Diana Wellesley²², Natalya Zymak-Zakutnia²³, Ingeborg Barisic²⁴, Hermien E K de Walle²⁵, Monica Lanzoni²⁶, Carmel Mullaney²⁷, Lindsay Pennington¹, Judith Rankin¹

Affiliations

¹ Population Health Sciences Institute, Newcastle University, Newcastle, UK.
² Department of Woman-Mother-Child, University Medical Center CHUV, Lausanne, Switzerland.
³ Rare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, Valencia, Spain.
⁴ Epidemiology Department, National Institute of Health Doutor Ricardo Jorge, Lisbon, Portugal.
⁵ Directorate for Healthcare Planning, Organisation and Evaluation; Registries and Health Information Unit, Ministry of Health of the Basque Government, Vitoria-Gasteiz, Spain.
⁶ Malta Congenital Anomalies Register, Directorate for Health Information and Research, Pietà, Malta.
⁷ INSERM U1153, CRESS, Obstetrical Perinatal and Pediatric Epidemiology Research Team (EPOPé), Université de Paris, Paris, France.
⁸ Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.
⁹ Division for Mental and Physical Health, Norwegian Institute of Public Health, Bergen, Norway.
¹⁰ National Perinatal Epidemiology Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK.
¹¹ South West Congenital Anomaly Register (SWCAR), Bristol Medical School, University of Bristol, Bristol, UK.
¹² Styrian Malformation Registry, Medical University of Graz, Graz, Austria.
¹³ Provinciaal Instituut voor Hygiene (PIH), Antwerp, Belgium.
¹⁴ Registro IMER - IMER Registry (Emilia Romagna Registry of Birth Defects), Center for Clinical and Epidemiological Research, University of Ferrara, Azienda Ospedaliero-Universitaria di Ferrara, Ferrara, Italy.
¹⁵ Auvergne Registry of Congenital Anomalies (CEMC-Auvergne), Department of Clinical Genetics, Centre de Référence des Maladies Rares, University Hospital of Clermont-Ferrand, Clermont-Ferrand, France.
¹⁶ Tuscany Registry of Congenital Defects (RTDC), Institute of Clinical Physiology - National Research Council/Fondazione Toscana Gabriele Monasterio, Pisa, Italy.
¹⁷ Register of Congenital Malformations of Reunion Island, CHU Réunion, St Pierre, France.
¹⁸ Malformation Monitoring Centre Saxony-Anhalt, Medical Faculty, Otto-von-Guericke University, Magdeburg, Germany.
¹⁹ Brittany Registry of Congenital Anomalies, CHU Rennes, University Rennes, Inserm, EHESP, Irset (Institut de Recherche en Santé, Environnement Ettravail), Rennes, France.
²⁰ French West Indies Registry, Registre des Malformations des Antilles (REMALAN), Maison de la Femme de la Mère et de l'Enfant, University Hospital of Martinique, Fort-de-France, France.
²¹ CARIS, Public Health Wales, Singleton Hospital, Swansea, UK.
²² Wessex Clinical Genetics Department, Princess Anne Hospital, Southampton, UK.
²³ OMNI-Net Ukraine Birth Defects Program, Khmelnytsky City Children's Hospital, Khmelnytsky, Ukraine.
²⁴ Centre of Excellence for Reproductive and Regenerative Medicine, Children's Hospital Zagreb, Medical School University of Zagreb, Zagreb, Croatia.
²⁵ Department of Genetics, EUROCAT Northern Netherlands, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
²⁶ European Commission, Joint Research Centre (JRC), Ispra, Italy.
²⁷ Department of Public Health, Health Service Executive (HSE) South East Area, Dublin, Ireland.

Abstract

Background: The total prevalence of congenital heart defects (CHDs) varies by populations and over time. Studies that examine trends in the prevalence of CHD in different regions may shed light on our understanding of the occurrence of CHD and the impact of different risk factors.

Objectives: To examine trends in total and live birth prevalence of nonsyndromic CHD in Europe between the years 2008 and 2015 and to investigate if the decreasing trend reported by previous studies is continuing.

Methods: Cases of CHD delivered between January 1, 2008 and December 31, 2015 notified to 25 population-based EUROCAT (European Surveillance of Congenital Anomalies) registries in 14 countries, formed the population-based case-series. Prevalence (total/live) rates and 95% confidence intervals were calculated as the number of cases per 10,000 births (live and stillbirths). Time trends in prevalence of all nonsyndromic CHDs and for three CHD severity groups (very severe, severe, and less severe) were plotted using a Poisson regression multilevel approach.

Results: The total prevalence of nonsyndromic CHD was 57.1 per 10,000 births (live births and stillbirths) for the 8-year period and remained stable across the three CHD severity groups while the live birth prevalence was 60.2 per 10,000 births. There was considerable variation in the reported total CHD prevalence and the direction of trends by registry. A decreasing prevalence of CHD was observed for the Norway and England/Wales registries, whereas the CHD prevalence increased for registries in Italy and Croatia.

Conclusions: The total prevalence of CHD in Europe between the years 2008 and 2015 remained stable for all CHD and across the three CHD severity groups. The decreasing trend reported by previous studies has not continued. However, we found significant differences in the total and live birth prevalence by registry.

Keywords: European Surveillance of Congenital Anomalies; congenital heart disease; prevalence rate.

MeSH terms

Europe / epidemiology
Female
Heart Defects, Congenital* / epidemiology
Humans
Pregnancy
Prevalence
Registries
Stillbirth*

Grants and funding

MR/K02325X/1/MRC_/Medical Research Council/United Kingdom