Version: 1.0.0 | Published: 15 Apr 2026 | Updated: 0 days ago
Summary
Population Size:
-1
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.
In Pipeline:
Available
Coverage
Spatial:
- United Kingdom
- Scotland
Typical Age Range Min:
0
Typical Age Range Max:
1
Dataset Completeness:
Material Type:
None/not available
Follow Up:
Unknown
Provenance
Origin
Purpose:
Disease registry
Dataset Type:
Health and disease
Dataset Sub-Type:
Not applicable
Source:
EPR
Image Contrast:
Not stated
Temporal
Publishing Frequency:
Annual
Start Date:
01 January 2021
Time Lag:
More than 6 months
Accessibility
Access
Access Service Category:
TRE/SDE
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 Limitation:
General research use
Data Use Requirements:
- Not for profit use
- Project-specific restrictions
Format and Standards
Vocabulary Encoding Scheme:
NHS SCOTLAND NATIONAL CODES
Conforms To:
NHS SCOTLAND DATA DICTIONARY
Language:
English
Format:
- text
- csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Findings
0
Count
01 February 2026