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    Overview
    Acronym
    CARS
    Type of information
    Registry data
    Description

    CARIS aims to collect reliable data about congenital anomalies that can then be used to help:

    • build up and monitor the picture of congenital anomalies in Wales
    • assess interventions intended to help prevent or detect congenital anomalies
    • plan and co-ordinate provision of health services for affected babies and children
    • assess possible clusters of birth defects and their causes

    CARIS collects information about any fetus or baby who has or is suspected of having a congenital anomaly and whose mother is normally resident in Wales at time of birth. It includes babies in whom anomalies are diagnosed at any time from conception to the end of the first year of life. Data collection commenced on 1st January 1998 and includes any baby where pregnancy ended after this date.

    CARIS uses a multi-source data collection method using a wide range of sources within the NHS. This ranges from antenatal ultrasound, clinical letters, post-mortems and laboratory results. CARIS also accesses a number of databases including SHIRE (Medical Genetics database), PEDW, NCCHD, Paediatric Cardiology database. Medical records are accessed to confirm, validate and add further details to the information already collected.

    Due to the nature of this dataset linkage based on the babies is challenging. This is because many pregnancies (approximately 20% of the total) end in fetal loss or termination. However, linkage based on the mother can be performed.

    Free keywords
    Congenital anomalies
    Topics
    Health status
    Country(ies):
    GEO coverage
    Nuts 3
    Target Population
    Specific groups
    Age range
    From 0 years to 4 years
    Sex
    Both
    Data Collection Period
    From 01 January 1998 - Ongoing
    Language(s)
    English
    Updating Periodicity
    Annually
    Personal Identifier
    Patient identifier
    Level of aggregation
    Other format
    Linkage possible
    Yes
    Data Owner(s)
    Public Health Wales NHS Trust
    Contact name
    Public Health Wales NHS Trust
    Contact e-mail
    Caris@wales.nhs.uk
    Contact info (address)

    2 Capital Quarter

    Tyndall Street

    Cardiff

    CF10 4BZ

    Updated on 19 December 2022