What are Congenital Anomalies?
Congenital anomalies (birth defects) are a major cause of infant mortality, childhood morbidity and long-term disability, occurring in 2-3% of live births and 14-24% of stillbirths. Maternal illnesses (e.g. diabetes mellitus, maternal obesity), some infectious diseases, conditions such as folic acid deficiency, exposure to certain medicines, recreational drugs (including alcohol and tobacco) and certain environmental chemicals are factors that can cause congenital anomalies.
Congenital Anomaly Registers in Ireland
There are two active regional congenital anomaly registers in the Republic of Ireland; all are members of JRC-EUROCAT, the European network of congenital anomaly registers. Together the registers cover approx. 23% of all births in Ireland. Each is led by a Specialist in Public Health Medicine, with part-time research nurse and limited clerical support. All are permanent HSE staff working in departments of public health. Prevalence data from the Irish registries is publicly available on the EUROCAT website.
Information leaflet on Congenital Anomaly Registers in Ireland (LENUS)
JRC-EUROCAT Central Database Privacy Statement
The aim of Congenital Anomaly Registers
The aim of the registries is to improve the health of the Irish people through the provision of health intelligence on congenital anomalies.
In addition to facilitating early warning of new teratogenic exposures, this data is used to inform and evaluate primary prevention of congenital anomalies and to enable the planning of health services for these conditions.
The purpose of Congenital Anomaly Registers
- Set up and maintain surveillance of congenital anomalies
- Provide epidemiological information on congenital anomalies in Ireland
- Detect and investigate trends in the frequency of congenital anomalies to assess the impact of known or suspected risk factors
- Act as an information and resource centre for the population and health professionals regarding clusters or exposures or risk factors of concern
- Participate in congenital anomaly research, individually and in collaboration with the EUROCAT network
- Analyse congenital anomaly related routine health data and translate it into information for effective management of services
- Communicate the evidence (public health data and scientific literature on effectiveness) to the decision makers and stakeholders
- Provide Irish data on congenital anomalies to the EUROCAT database
Collaboration
Most individual birth defects are rare, so collaboration between countries and registries is needed for research.
As member registries of EUROCAT, we
- provide essential epidemiologic information on congenital anomalies in Europe
- facilitate early warning of new teratogenic exposures
- evaluate the effectiveness of primary prevention
- assess the impact of developments in prenatal screening
- provide a ready collaborative network and infra structure for research related to the causes and prevention of congenital anomaly, treatment and care of affected children
Important means of preventing congenital anomalies
- immunisation against rubella
- pre- conception care
- avoidance of teratogens
- adequate folic acid status in the reproductive age group
- abstain from alcohol
- stop smoking
- care of diabetic and epileptic women of reproductive age
- health promoting information to the public to inform reproductive choices and decisions
- investigation and reduction of health inequalities
Read more about alcohol and pregnancy
Read about the HSE National Rare Diseases Office (NRDO)
Cork and Kerry Congenital Anomaly Register
The Cork & Kerry Registry started in 1996 and was granted approved membership of EUROCAT in 1998. The Clinical Research Ethics Committee of the Cork Teaching Hospitals approves the Registry for research. Staffing includes a part-time nurse/researcher plus a part-time Specialist in public health medicine and surveillance scientist support. The Department of Health and Children through the Health Services Executive provides funding for the register. The Registry covers the counties of Cork and Kerry in the SW of Ireland (population-based, all mothers resident in this geographic area)
Access Cork and Kerry Congenital Anomaly Register publications on Lenus
Contact Details
- Dr. Mary O'Mahony, Specialist in Public Health Medicine
- Ms Maria Ryan, Research Nurse
Address: Department of Public Health - HSE South (Cork & Kerry)
Floor 2, Block 8, St. Finbarr's Hospital, Douglas Road, Cork, Ireland
Phone:+ 353 21 4927 6014
Fax : + 353 21 4923257
Email: maryt.omahony@hse.ie or maria.ryan1@hse.ie
South East Congenital Anomaly Register
The South East Ireland Congenital Anomaly Register was established in the year 2000 and data was retrospectively collected from 1997 onwards. The Department of Health and Children funds the registry through the Health Service Executive (HSE). The registry is population-based and includes babies born to all mothers resident in the South East. i.e. counties Waterford, Wexford, Carlow, Kilkenny and South Tipperary.
Contact Details
- Catherine Lynch, Consultant in Public Health Medicine
- Hannah Meehan, Clinical Nurse Manager 2
Address: Department of Public Health - HSE Dublin and South East
Unit 2 Industrial & Business Park, Purcellsinch, Dublin Rd, Co. Kilkenny
Phone: +353 56 770 4301
Email: catherine1.lynch@hse.ie or hannah.meehan1@hse.ie
