Joint Research Centre (JRC) EUROCAT European Registries of Congenital Anomalies. Cork and Kerry Congenital Anomaly Register, JRC EUROCAT Registry 49
Department of Public Health, HSE-S in association with EUROCAT central registry https://eu-rd-platform.jrc.ec.europa.eu/eurocat_en
EUROCAT South data collection commenced in 1996.
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. They collect information to:
- learn more about congenital anomalies and help research into their causes, treatment and prevention
- provide early warning of potential harmful exposures that may contribute to anomalies during pregnancy
- examine the survival and health of babies born with anomalies,
- look at trends and the numbers of babies born with a congenital anomaly in our region
- participate and contribute to the European network of registries.
JRC EUROCAT South covers the counties of Cork and Kerry in the South West of Ireland (population-based, all mothers resident in this geographic area).
Data collection commenced in 1996 and is ongoing.
There are three regional congenital anomaly registers in the Republic of Ireland. All are members of JRC EUROCAT, the European network of congenital anomaly registers; they provide an anonymised computerised register of cases of congenital anomaly born to mothers resident in Ireland.
As of 2022, only two of the registries are active JRC EUROCAT South and JRC EUROCAT South-East. JRC EUROCAT East is not active currently.
Detailed description of the anomaly and baby malformations, demographics of parents and baby such as age, date of birth, weight, date of delivery, parental occupation, medications taken, chronic paternal illness, smoking and alcohol status, maternal illness before and during pregnancy and outcome of previous pregnancies is gathered.
The Irish congenital anomaly registries working with the EUROCAT central registry and the EUROCAT network of registries. EUROCAT aims to encourage the use of its data for epidemiological surveillance and research whilst ensuring the protection of complete confidentiality of the data and ensuring that existing knowledge is fully brought to bear on the interpretation of its data. Details available at EUROCAT | EU RD Platform (europa.eu)
A HSE registry nurse collects data from medical charts/records on an ongoing basis and codes data before entering it electronically on
the JRC-EUROCAT local register. Data is uploaded to the JRC EUROCAT bi-annually. The registry is based on active case finding.
Yes – full data dictionary published on JRC-EUROCAT website
https://eu-rd-platform.jrc.ec.europa.eu/eurocat/data-collection/guidelines-for-data-registration_en
N/A.
Maternal education; Socioeconomic status of mother; Socioeconomic status of father; Migrant status; Maternal place of residence
Mother’s occupation at time of conception included as an exposure variable
Father’s occupation.
ICD-10-AM https://www.who.int/classifications/icd/ICD10Volume2_en_2010.pdf
McKusick/OMIM Code
http://www.ncbi.nlm.nih.gov/omim
International Standard Classification of Education
http://uis.unesco.org/en/topic/international-standard-classification-education-isced
International Standard Classification of Occupations
https://www.ilo.org/public/english/bureau/stat/isco/
ATC Code Drug Description
https://www.whocc.no/atc_ddd_index/
Orpha Codes
http://www.rd-code.eu/introduction/
HSE South average 220 cases per annum.
Links to annual newsletters and published reports from the registry are available on the HSE registries website. All JRC-EUROCAT publications on congenital anomalies are publicly listed on the JRC-EUROCAT website.
Open access to anonymous data via the JRC EUROCAT website. Researcher access to local anonymised data via a management approval process.
No.