MALTA CONGENITAL ANOMALIES REGISTRY
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 130 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. Let us raise awareness. #WorldBDDay.
World
Birth Defects Day 2020 – Many Defects One Voice - Spina Bifida Fact Sheet
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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).
Publications
As of 2004 the Malta Congenital Anomalies Register has presented its data in the form of regularly updated tables which can be found in the 'Summary Statistics' section below. Annual and half yearly reports published before 2004 can be donwloaded in pdf format on our Archive page.
SUMMARY STATISTICS
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.
Abstract availabe
here, full text available on request.
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
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 (Malta, 2001). 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 themselves.