History and Funding
The 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 nurse (0.48 WTE) and specialist in public health medicine (0.1 WTE) with support sessions by surveillance scientist, IT, technical and administrative staff. The Department of Health through the Health Services Executive provides funding for the register.
Population Coverage
The Registry covers the counties of Cork and Kerry in the SW of Ireland (population‐based, all mothers resident in a geographic area). Between 2007 and 2013, 1% of resident mothers gave birth outside the registry area. Since 1996, the total number of births each year has varied between 8 and 10 thousand births. The average number of births per year over the most recent ten years (2004-2013) is 9777 births per annum.
Sources of Ascertainment
The registry is based on active case finding. Data for the registry 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, post mortem examinations, and social allowance records. The national cytogenetic laboratory and the national centre for paediatric cardiology and cardiac surgery database are additional sources of confirmatory data.
Maximum Age at Diagnosis
Most cases are identified before the first birthday. The registry seeks HIPE data 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 or orthopaedic outpatient letters and are registered.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Abortion is illegal in Ireland. However, women in Ireland have the option to travel outside of Ireland for termination of pregnancy following prenatal diagnosis. Where information is available to the registry about these cases, they are included.
Stillbirth and Early Fetal Deaths
Babies born without signs of life with a gestational age of >= 24 weeks or a weight of >= 500g are registered in national statistics. Early fetal deaths / spontaneous abortions following prenatal diagnosis of congenital anomaly are also entered on the registry and reported to EUROCAT (those <20 weeks gestation are not included in prevalence data). National autopsy rates for stillbirths and early neonatal death (0-7 days) have decreased due to controversy arising from the issue of consent.
Exposure Data Availability
Information on parental occupation, maternal drug use, smoking and alcohol use, illness during pregnancy and outcome of previous pregnancies is gathered
Denominators and Controls Information
Denominator data is available from the national Central Statistics Office (CSO). The CSO publishes national statistics in respect of all births annually and provides rates for the Rep. of Ireland and broken down by county.
Registry Description References
Ethics & Consent
Approval is required from an ethics committee representing medical, paramedical, legal, lay and academic interests and is reviewed as indicated. Additional approval would be required for any studies which 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. No plans to introduce a requirement for informed consent – in accordance with long established practice for longitudinal population based registers. Balance is in favour of public interests as minimal individual risk.
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