History and Funding
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 funds the registry through the Health Service Executive (HSE).
Population Coverage
The registry is population based and includes babies born to all mothers resident in the South East. The registry covers approximately 6000 births per year, which represents 10% of all births in the Republic of Ireland.
Sources of Ascertainment
The registry is based on active case finding. A child with a malformation, born after 01/01/1997, can be registered at any age. There is no upper age limit imposed for registration of a case. Multiple sources of data are used in ascertainment and verification of cases. They include:
- Hospital Inpatient Enquiry System (HIPE),
- Child Health Information System,
- Births Notification Form,
- Labour Ward and NICU Registers,
- Paediatric and Obstetric Case Records,
- Post‐mortem Examinations,
- Cytogenetic Laboratories
- Information from Disability and Nursing Systems,
- Prenatal Screening records.
Medical notes are reviewed to assist in the confirmation of the diagnosis. EUROCAT guidelines are adhered to in respect of inclusions and exclusions.
Maximum Age at Diagnosis
There is no upper age limit.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy was illegal in Ireland prior to 2019. Women had the option to travel outside of Ireland for termination of pregnancy following prenatal diagnosis. The Health (Regulation of Termination of Pregnancy) Act 2018 came into force in Ireland on 1st January 2019; this provides for termination of pregnancy in cases of fatal foetal anomaly and / or life-limiting conditions diagnosed during pregnancy. Where information is available to the registry about these cases, they are included.
Stillbirth and Early Fetal Deaths
Registration covers affected fetuses spontaneously lost from 24 weeks gestation or with a birth weight > 500g
Exposure Data / Availability
Maternal health, drug and lifestyle exposure data is collected primarily from paediatric and obstetric medical records.
Denominators and Controls Information
Denominator data is obtained from the national Central Statistics Office (CSO).
Ethics & Consent
TEthics & Consent
The registry required ethics committee approval in order to collect and store data. This approval was sought at the time of setting up the registry and there has been no requirement for renewal of the approval. Currently consent is not obtained for inclusion of cases on the register. Information about the registry is available through the antenatal service and at www.hse.ie.
Address for Further Information
Dr Carmel Mullaney, Registry Leader
Department of Public Health HSE Dublin and South East
Unit 2 Top Floor, Industrial & Business Park
Purcellsinch, Dublin Road,
Kilkenny, R95 TK64,
Ireland
Tel: +35356 7704301
Email: carmel.mullaney@hse.ie
Last updated: 19/09/2023