Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 229 days ago
Documentation
Description:
DataLoch has collaborated with the BREATHE Health Data Research Hub and others at Health Data Research UK (HDRUK) to create a respiratory-related database of South-East Scotland residents (NHS Lothian) with chronic respiratory conditions, specifically Asthma, Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Lung Disease (ILD). DataLoch"s respiratory registry is one of three related registries alongside others in England (Clinical Practice Research Datalink (CPRD) Aurum) and Wales (Secure Anonymised Information Linkage Databank (SAIL)). In addition to these conditions, the DataLoch respiratory registry includes Cystic Fibrosis (CF) and Wheeze (a common respiratory symptom).
This database of respiratory patients also contains research-ready data related to these patients" demographics, diagnoses, condition events, measurements and medications, expertly curated with clinical input and as much harmonisation as possible across the different UK registries using methodology in a soon-to-be-published paper. The data is presented in tables where each dataset has had its data chosen and derived from multiple sources and ran against algorithms to remove the noise from the raw data.
Coverage
Spatial:
United Kingdom; United Kingdom,Scotland; United Kingdom,Scotland,City of
Edinburgh; United Kingdom,Scotland,Midlothian; United Kingdom,Scotland,East
Lothian; United Kingdom,Scotland,West Lothian
Typical Age Range:
0-150
Follow Up:
> 10 Years
Pathway:
Primary and secondary care.
Provenance
Origin
Purposes:
Disease registry
Sources:
EPR
Collection Situations:
- Primary care - Clinic
- Secondary care - In-patients
- Secondary care - Outpatients
Temporal
Accrual Periodicity:
Other
Start Date:
01 January 2004
Time Lag:
Not applicable
Accessibility
Access
Access Rights:
Access Request Cost:
Delivery Lead Time:
Not applicable
Jurisdictions:
- GB-SCT
- GB-GBN
Data Controller:
NHS Lothian
Data Processor:
University of Edinburgh
Usage
Data Use Limitations:
Project-specific restrictions
Data Use Requirements:
- Ethics approval required
- Disclosure control
- Project-specific restrictions
Resource Creators:
DataLoch
Format and Standards
Vocabulary Encoding Schemes:
- READ
- ICD10
- ATC
- OTHER
Languages:
en
Formats:
text/tsv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Patients with COPD in DataLoch Respiratory
55200
Count
18 May 2023
Persons
Patients with Asthma in DataLoch Respiratory
177700
Count
18 May 2023
Persons
Patients with Wheeze in DataLoch Respiratory
39500
Count
18 May 2023
Persons
Patients with Cystic Fibrosis in DataLoch Respiratory
400
Count
18 May 2023
Persons
Patients with ILD in DataLoch Respiratory
23700
Count
18 May 2023