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Congenital Conditions and Rare Diseases Registration and Information Service for Scotland (CARDRISS
Population Size
Not reported
Years
2021
Associated BioSamples
None/not available
Geographic coverage
United Kingdom Scotland
Lead time
Variable
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
Keywords
Register, Congenital, Maternity
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
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
Time to dataset access
Variable
Access request cost
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