MALTA CONGENITAL ANOMALIES REGISTRY
Contact Person: Dr Miriam Gatt
Support World Birth Defects Day
March 3 is World Birth Defects Day. Every year, about 8 million babies worldwide are born with a serious birth defect impacting millions of families. In Malta around 140 babies are born with birth defects of varying degrees each year. A number of these can be prevented by adopting healthy lifestyles, good nutrition including an adequate intake of the vitamin folic acid and appropriate vaccination.
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AIMS
To collect data about all fetal deaths and infants with a diagnosis of congenital anomalies on the islands of Malta and Gozo
To keep a register of all cases of congenital anomalies diagnosed until one year of age
To provide data which may be required for epidemiological and research studies
To detect any changes in occurrence of congenital anomalies
To issue regular reports and provide physicians and the general public with information they may need, always respecting strict confidentiality.
To maintain active collaboration with international organisations and networks working in the field of congenital anomalies.
BACKGROUND
Data on congenital anomalies diagnosed at birth at St. Luke’s Hospital (Malta) was originally collected through the University of Malta between 1985 and 1996. The register became a member of EUROCAT (European Registration of Congenital Anomalies and Twins) in 1986. Funding for this project by the University of Malta ran into difficulties in 1995 and subsequently the Department of Health Information started co-ordinating all previous efforts of recording congenital anomalies. A population based Malta Congenital Anomalies Register was established by DHI as of January 1997. This register now covers births from all hospitals on the Maltese Islands and includes all cases suspected or diagnosed with a congenital anomaly until one year of age. This register still actively collaborates with EUROCAT and also became a member of the ICBDSR (International Clearinghouse of Birth Defects Surveillance and Research) in 2000.
COVERAGE
The register is population based and includes all births on the islands of Malta and Gozo which amount to around 4000 births per year. The small size and population of the islands (area: 316 km2; population: 404,962); the well defined boundaries, absence of significant ethnic minority groups and illegality of termination of pregnancy make the islands ideal for epidemiological studies.
DATA COLLECTION AND SOURCES OF INFORMATION
Congenital Anomalies, for the purposes of the register, are defined as ‘structural, functional, metabolic, behavioural and hereditary defects present at birth’.
Data collection occurs on both a passive and active basis. On a passive basis, paediatricians and private hospitals are asked to report any newly diagnosed cases of congenital anomalies. On an active basis, members of the staff of the Department of Health Information visit Mater Dei Hospital obstetric, paediatric and echocardiography units to collect data directly and review patient notes.
The hospitals presently involved in data capture are Mater Dei Hospital (MDH), Gozo General Hospital (GGH), St. James Hospital, Sliema and Zabbar.
Several Sources of data are used to ensure as complete a coverage as possible. Present sources of data from Mater Dei Hospital are: Doctor’s notifications, notifications from the delivery units, obstetric wards, neonatal and paediatric intensive care units (NICU/PICU), Echocardiography Lab., Genetics Clinic, National Ostetrics Information System (NOIS), Hospital Activity Analysis Register, Mortality Register, Pathology Autopsy reports, and Hypothyroid screening programmes.
The registry keeps named records in order to: link reports arriving from several sources, and so avoid duplicate registration; allow the follow up of cases to confirm, update the diagnosis and to study the outcome of malformed children; and trace the cases in order to conduct prospective or retrospective aetiological studies.
Patient Hospital files are reviewed whenever possible to validate and ensure accuracy of registrations. Strict confidentiality is respected at all times.
REPORTING FORMS
Unless otherwise stated all documents are in PDF format.
Downloadable copy of Report Form for notifying congenital anomalies
INTERNATIONAL RELATIONS
The Malta Congenital Anomalies Register has been a member of the European Registration of Congenital Anomalies (EUROCAT) since 1986. In September 2000 it was accepted as a Member of the International Clearinghouse of Births Defects Surveillance and Research (ICBDSR).
SUMMARY STATISTICS
As of 2004 the Malta Congenital Anomalies Register has presented its data in the form of regularly updated tables.
Data on the occurrence and prevalence of congenital anomalies in Malta can be found here.
Summary statistics for Malta and other European Registries may be found at the EU Commission EUROCAT website.
PUBLICATIONS
Gatt, M., England, K., Grech, V,. & Calleja, N. (2015). Contribution of Congenital Anomalies to Neonatal Mortality Rates in Malta, Paediatric and Perinatal Epidemiology, 29(5), 401- 406.
Full text available here.
Wilhelm, M., Gatt, M., Hrzic, R., Calleja, N., & Zeeb, H. (2024). Evaluating neonatal mortality in Malta compared with other EU countries: Exploring the influence of congenital anomalies and maternal risk factors. Paediatric and Perinatal Epidemiology, 38(8), 703-713.
Full Text available here.
FACTSHEETS
World Birth Defects Day 2022 – Birth Defects
World Birth Defects Day 2020 – Spina Bifida
World Birth Defects Day 2019 – Hypospadias
World Birth Defects Day 2018 – Orofacial Clefts
World Spina Bifida and Hydrocephalus Day 2017
World Birth Defects Day 2017 – Congenital Heart Defects
World Birth Defects Day 2016 – Neural Tube Defects 1994 – 2014
Down Syndrome in Malta 1993 – 2012
Congenital Anomalies in Malta 2003 – 2012
AD HOC REPORTS
Abstracts of the Scientific Symposium of the ICBDSR – “Evaluation of Medications as Teratogens” – Malta September 2005
Geographical Distribution of Congenital Anomalies in Malta & Gozo 1993-2004 (November 2006)
COMPARISON OF PREVALENCES WITH OTHER EUROPEAN COUNTRIES
Please link to the EUROCAT site for interactive online comparison of Malta data with other European Registries.
INTERNET LINKS
European Surveillance of Congenital Anomalies (EUROCAT)
International Clearinghouse of Birth Defects and Research(ICBDSR)
Centres for Disease Control-National Centres on Birth Defects and Developmental Disabilites (NCBDDD)
CONFIDENTIALITY STATEMENT
The Malta Congenital Anomalies Registry collects and processes personal information regarding congenital anomalies for statistical and research purposes and in the interests of public health. All data is collected and processed in accordance to the Data Protection Act 2018 (CAP. 586). The Registry does not disclose identifiable data outside the Health Division unless the law permits it. All individuals are entitled to know what information the Registry holds about them.