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Rare Disease
Population Size
22,000
People
Years
2011 - 2024
Associated BioSamples
None/not available
Geographic coverage
West Midlands
Lead time
2-6 months
Summary
Rare Disease data for 22,000 patients with over 100 different diseases.
Documentation
Rare Disease data for 22,000 patients with over 100 different diseases.
Dataset type
Health and disease
Dataset sub-type
Rare diseases
Dataset population size
22000
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Persons | 22,000 patients multimodal data- national dataset. | 22000 | Count | 20 Feb 2025 |
Provenance
Image contrast
Not stated
Biological sample availability
None/not available
Structural Metadata
Details
Publishing frequency
Static
Version
1.0.0
Modified
19/02/2025
Citation Requirements
SDE093
Coverage
Start date
01/01/2011
End date
30/11/2024
Time lag
2-6 months
Geographic coverage
West Midlands
Accessibility
Language
en
Alignment with standardised data models
LOCAL
Controlled vocabulary
LOCAL
Format
SQL
Data Access Request
Dataset pipeline status
Not available
Access rights
Information Governance and Ethics - West Midlands Secure Data Environment (https://westmidlandssde.nhs.uk/information-governance-and-ethics)
Time to dataset access
2-6 months
Access request cost
Please email wmsde@uhb.nhs.uk
Access method category
TRE/SDE
Access service description
Data Request Process - West Midlands Secure Data Environment (https://westmidlandssde.nhs.uk/research/data-request)