Version: 1.0.0 | Published: 15 Apr 2026 | Updated: 1 day ago
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:
United Kingdom,Scotland
Typical Age Range:
0-1
Follow Up:
Unknown
Provenance
Origin
Purposes:
Disease registry
Sources:
EPR
Temporal
Accrual Periodicity:
Annual
Start Date:
01 January 2021
Time Lag:
More than 6 months
Accessibility
Access
Access Service:
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/
Access Request Cost:
Delivery Lead Time:
Variable
Data Controller:
Public Health Scotland
Data Processor:
Public Health Scotland
Usage
Data Use Limitations:
General research use
Data Use Requirements:
- Not for profit use
- Project-specific restrictions
Format and Standards
Vocabulary Encoding Schemes:
NHS SCOTLAND NATIONAL CODES
Conforms To:
NHS SCOTLAND DATA DICTIONARY
Languages:
en
Formats:
- text
- csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Findings
0
Count
01 February 2026