National Paediatric Mortality Register

Data Collection Type
National data collections of health and social care in Ireland
Organisation

The Children’s University Hospital Temple Street

Year established

1992

Statement of purpose

To provide accurate up-to-date information on paediatric mortality in Ireland.

Coverage

National

Description

The Paediatric Mortality Register obtains information on all sudden, unexpected/unexplained deaths in infants and young children in Ireland and conducts research into the identification of causes and prevention of sudden infant death as well as formulating childcare guidelines for parents on how best to reduce an infant’s risk of Sudden Infant Death Syndrome (SIDS). The register also provides and publishes accurate data on the incidence and categories of all paediatric deaths (aged 28 days–15 completed years) on an annual basis (2010 onwards).

Data content

Content includes age; sex; infant birth weight; place of death; circumstances surrounding the infant’s death; mother’s pregnancy history; maternal and paternal smoking status; alcohol consumption; infant medications taken; sleeping arrangements.

Data providers

Central Statistics Office (CSO), coroners, general practitioner (GP), pathologist, parents.

Data collection methodology

If consent is obtained, cases are notified to the register by emergency department staff. Participation is voluntary. CSO provides quarterly metadata files of deaths registered. Post-mortem results are provided by coroners.
All data is coded and entered in the register’s database. A coding system is used in order to assist with transfer of data into the statistical software package used for analysis. All data entry, statistical analysis, database management and reporting of results is carried out by register personnel only. The register’s strength lies in the size and continuity of the dataset, now comprising 500 SIDS cases and 1,700 controls, allowing trends in variables such as smoking rates, breastfeeding rates and use of medical services to be tracked on an annual basis. 

Data dictionary

Not available

Clinical coding scheme

International Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) codes assigned by the CSO.

Size of national collection

Approximately 300 records created on average annually. 

Publication frequency

Annual reports published since 1993.

Accessing data

Annual reports. Access to original paper version of questionnaires is restricted to register personnel only (locked filing cabinets). Access to the electronic database is further restricted to the register’s two researchers (password protected files).

Open data portal access

No

Email contact
Telephone contact
Other comments

The register is in the process of extending its national notification system for all paediatric deaths.
This register was previously called the National Sudden Infant Death Register. Infant mortality data, issued on a quarterly basis by the CSO, refers to deaths registered during that period. Due to delays in registration, the figures in some cases relate to deaths that occurred in the previous year. This means that SIDS figure from the CSO may differ from those of the register since the register’s figures are based on year of occurrence. The register also includes SIDS deaths in infants over one year of age whereas the CSO restricts its infant mortality figures to those deaths which occurred in infants under one year of age only.