Annual congenital anomalies report 2000

Abstract

AIMS - To collect data about all fetal deaths and infants with a diagnosis of congenital anomalies on the islands of Malta and Gozo. To detect any changes in occurrence of congenital anomalies.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 studies. To issue regular reports and provide physicians and the general public with information they may need, always respecting strict confidentiality. -- BACKGROUND - Data on congenital anomalies diagnosed at birth at St. Luke's Hospital (Malta) has been collected through the University of Malta since 1985. The register is a member of EUROCAT (European Registration of Congenital Anomalies and Twins). Funding by the University of Malta ran into difficulties in 1995. The Department of Health Information started co-ordinating all previous efforts of recording congenital anomalies and started a population based Malta Congenital Anomalies Register in January 1997. This register covers births from all hospitals on the Maltese Islands and includes cases diagnosed until one year of age. The register continues to be a member of EUROCAT. -- COVERAGE - The register is population based and covers all births on the islands of Malta and Gozo which amount to just under 5000 births per year. The small size and population of the islands (area: 316 km2 ; population: 376,335); 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 St. Luke's Hospital maternity, paediatric and echocardiography units to collect data directly and review patient notes. The hospitals involved in data capture are St. Luke's Hospital (SLH), Gozo General Hospital (GGH), St. Philip's Hospital, Capua Palace Hospital, and St. James Hospital. Present sources of data from St. Luke's Hospital are: Doctor's notifications, Labour ward, Post-natal / Nursery ward, SCBU, Echocardiography Lab., Genetics Clinic, National Obstetric Information Systems Database, SLH Hospital Activity Analysis Database, National Mortality Register and Pathology Autopsy report and Hypothyroid screening programmes. -- INTERNATIONAL RELATIONSHIPS - 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 an Associate Member of the International Clearinghouse of Births Defects Monitoring Systems (ICBDMS).