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

Population Size

Not reported
Population Size statistic card

Years

2021

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom Scotland

Geographic coverage statistic card

Lead time

Variable

Lead time statistic card

Summary

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.

Documentation

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.

Dataset type

Health and disease

Dataset sub-type

Not applicable

Associated media

https://publichealthscotland.scot/population-health/conditions-and-diseases/disease-registration/congenital-conditions-and-rare-diseases-registration-and-information-service-for-scotland-cardriss/overview/

Keywords

Provenance

Purpose of dataset collection

Disease registry

Source of data extraction

EPR

Image contrast

Not stated

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Annual

Version

1.0.0

Modified

05/05/2025

Coverage

Start date

01/01/2021

Time lag

More than 6 months

Geographic coverage

United Kingdom Scotland

Maximum age range

1

Dataset completeness

https://publichealthscotland.scot/media/31729/2025-02-25_congenitalconditionsinscotland2022_technicalreport.pdf

Accessibility

Language

en

Alignment with standardised data models

NHS SCOTLAND DATA DICTIONARY

Controlled vocabulary

NHS SCOTLAND NATIONAL CODES

Format

text/csv

Data Access Request

Dataset pipeline status

Available

Access rights

https://publichealthscotland.scot/services/data-research-and-innovation-services/electronic-data-research-and-innovation-service-edris/services-we-offer/

Time to dataset access

Variable

Access request cost

https://publichealthscotland.scot/services/data-research-and-innovation-services/electronic-data-research-and-innovation-service-edris/cost-of-services/

Access method category

TRE/SDE

Access service description

Scottish National Safe Haven / Trusted Research Environment: https://publichealthscotland.scot/services/data-research-and-innovation-services/electronic-data-research-and-innovation-service-edris/national-safe-haven-nsh/

Jurisdiction

UK

Data use limitation

General research use

Data use requirements

Project-specific restrictions,Not for profit use

Data Controller

Public Health Scotland

Data Processor

Public Health Scotland

Dataset Types: Health and disease

Collection Sources:

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