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Rare Disease

Population Size

22,000

People

Population Size statistic card

Years

2011 - 2024

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

West Midlands

Geographic coverage statistic card

Lead time

2-6 months

Lead time statistic card

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 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)

Dataset Types: Health and disease

Dataset Sub-types: Rare diseases

Collection Sources: