History and Funding
The register was established in 1997 to collect data on births from 1st January 1996, and was granted approved membership of EUROCAT in 1998. Staffing includes a part-time Research Nurse plus a part-time Specialist in Public Health Medicine, administrative support and support from the Health Informatics Manager in the Department of Public Health HSE South (Cork and Kerry). The Department of Health through the Health Services Executive provides funding for the register.
Population and Coverage
The Registry covers the counties of Cork and Kerry in the SW of Ireland (population-based, all mothers resident in a geographic area). Approximately 1% of resident mothers give birth outside the registry area. Between 2012 and 2021 the total number of births each year has varied between 8 and 10,000 births. The average number of births each year over the most recent 10 years is 8,826 births per annum.
Sources of Ascertainment
The register is based on active case finding. Data for the register includes hospital records from obstetric and neonatal departments, Paediatric cardiology and orthopaedics outpatient letters, Hospital In-patient Enquiry Data (HIPE), birth notifications, stillbirth certificates, Central Statistics Office (CSO) data on deaths in children up to the age of 2 years and post mortem examinations. The national cytogenetic laboratory and the national Centre for Paediatric cardiology and cardiac surgery database are historical sources of confirmatory data.
Maximum Age at Diagnosis
On average 96% of all registered cases are identified diagnosed before the first birthday. 20% of all registered cases are diagnosed in the prenatal period with 36% of cases registered in 2021 having prenatal diagnosis. The registry seeks hospital discharge data (HIPE) up to age 7 years. Some rare disease cases e.g. Marfan Syndrome or Ehlers-Danlos Syndrome are diagnosed later than this and come to the registry in routine data sources e.g. Paediatric cardiology and/or Orthopaedic outpatient letters and are registered.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Prior to 1st January 2019 all abortion was illegal in Ireland. However, women in Ireland have the option to travel outside of Ireland for termination of pregnancy. Where information is available to the registry about such cases that follow prenatal diagnosis of congenital anomaly, they are included. The Health (Regulation of Termination of Pregnancy) Act 2018 came into force in Ireland on 1st January 2019 and provides for termination of pregnancy in cases of fatal foetal anomaly and / or life-limiting conditions diagnosed during pregnancy.
Stillbirth definition and Early Fetal Deaths
Babies born without signs of life with a gestational age of >= 24 weeks or a weight of >= 500g are registered. Early foetal deaths / spontaneous abortions are not registered nationally in Ireland but the registry does record congenital anomaly cases from >20 weeks. In Ireland in 2020, an autopsy was undertaken following 53% of stillbirths (n=116 of 219) and 41.4% of early neonatal deaths (n=46 of 111). If a prenatal diagnosis has been established prior to delivery then an autopsy may not be done.
Exposure Data Availability
Information on parental occupation, maternal medication, drug use, smoking and alcohol use, maternal illness before and during pregnancy, paternal chronic illness and outcome of previous pregnancies is gathered.
Denominators and Controls Information
Denominator data is available from the national Central Statistics Office (CSO). The CSO now publishes national perinatal statistics in respect of all births annually and provides rates for the Republic of Ireland and broken down by county.
Registry Description References
Click here to access Cork & Kerry Congenital Anomaly Register publications on Lenus:
https://www.hse.ie/congenitalanomalyregistersireland
Ethics and Consent
Approval is required from an ethics committee representing medical, paramedical, legal, lay and academic interests and is reviewed as indicated. The Clinical Research Ethics Committee of the Cork Teaching Hospitals approved the Registry for research. Additional approval would be required for any studies that require identifiable patient data or the merging of data sources. To date no such studies have been done. National legislation does not require informed consent in order to register a baby with a congenital anomaly. There are no plans to introduce a requirement for informed consent – in accordance with long established practice for longitudinal population based registers. Processing is necessary for reasons of public interest in the area of public health. No personal information is shared outside of the HSE. Individual risk is negligible.
Address for Further Information
Dr. Mary O'Mahony,
Specialist in Public Health Medicine,
Department of Public Health,
HSE South (Cork & Kerry),
Floor 2, Block 8, St. Finbarrs Hospital,
Douglas Road,
Cork,
Ireland.
Tel: + 353 21 4927601-4
Fax : + 353 21 4923257
Email: maryt.omahony@hse.ie
Registry description (Irish version)
Last updated 26.04.2023