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Congenital Conditions and Rare Diseases Registration and Information Service for Scotland - (CARDRISS)

Summary

Abstract

CARDRISS includes a national register that collects and holds information about babies in Scotland with a major structural and chromosomal condition or recognised syndrome up to their first birthday.

Keywords

Publisher

  • Identifier
    7
  • Name
    Public Health Scotland
  • Logo
  • Description
    Public Health Scotland is an NHS Board. We are uniquely sponsored by the Scottish Government and the Convention of Scottish Local Authorities (COSLA) on behalf of local government.
  • Contact point

Documentation

Description

Babies with a condition are included if the pregnancy is live born and suspected and/or diagnosed within their first year; a spontaneous still birth at 24 weeks and over; miscarriage at 23 weeks and under or a termination of pregnancy at any gestation. The register includes babies from pregnancies ending in January 2021 onwards, where the baby meets this inclusion criteria. The register will be extended in the future to also collect and hold information on other rare diseases.

Coverage

Spatial

  • Spatial coverage

    United Kingdom, Scotland

  • Geographic levels
    Not available

Temporal

  • Start date
    01/01/2021
  • End date
    Not available
  • Frequency
    Annual
  • Distribution release date
    Not available

Provenance

  • Purpose
    Disease registry
  • Source
    Epr
  • Collection situation
    Not available

Access and governance

  • Conditions of access
    General research use

Requesting access to this data

This is a secure dataset that can only be accessed by researchers from approved organisations.

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Usage

  • Conditions of use
    Not for profit use, Project-specific restrictions
  • Resource creator
    Not available
  • Is referenced by
    Not available

Access

Format and standards

  • Language
    English
  • Format
    text, csv

Enrichment and linkage

  • Related datasets
    • Not available
  • Linkage opportunity
    Not available
  • Tools
    • Not available

Synthetic data

Synthetic data is not yet available for this dataset. 

Data dictionary

CARDRISS ID

System generated unique identifier per baby.

OUTCOME OF PREGNANCY

This states whether the baby was live born, stillborn, late fetal loss or subject to a t...

PREGNANCY END DATE

The date the pregnancy ended.

BABY CHI

The baby's CHI number.

BABY SEX

The baby's state of being male or female, reflecting biological or assigned sex.

CARDRISS BABY DATE OF DEATH

The baby's date of death as recorded on the CARDRISS registry tool.

MOTHER CHI

Mother's CHI number.

MOTHER DATE OF BIRTH

The mother's date of birth.

MOTHER POSTCODE

The mother's postcode at the pregnancy end date.

OUT OF SCOTLAND FLAG

If the mother was a resident outside Scotland at end of pregnancy.

Variable description

Data type