BREATHE was a unique collaboration with patients and the public, UK Universities, third sector, Government organisations and industry from across the UK and globally.
The Hub was led by The University of Edinburgh, Imperial College London, the University of Leicester, Nottingham University Hospitals NHS Trust, Queen Mary University of London and Swansea University. SAIL Databank was used as the primary Trusted Research Environment for BREATHE. BREATHE worked at the interface of respiratory health and data science, and activities fell under three priority themes:
- Drug Discovery and Pharmacogenomics: enabling relevant datasets to be Findable, Accessible, Interoperable and Reusable (FAIR), and providing expert support to catalyse their use in respiratory research
- Real World Evidence: facilitating the better use of real-world evidence for respiratory care
- Digitally Enabled Trials: promoting the design and delivery of trials which encourage the use of digital technologies to enhance efficiency.
BREATHE’s legacy lives on through the establishment of three respiratory data registries in England, Scotland and Wales. All registries provide a baseline harmonised set of criteria and clinical coding for how asthma, COPD, and ILD should be characterised in routine health records, contain research-ready data related to patients’ demographics, diagnoses, condition events (e.g. ongoing GP or hospital care) and medications, and also provide the facility to link to wider records pertaining to comorbidities, other conditions, and healthcare history.
The groundwork to create a fourth in Northern Ireland is underway, tying in with the activities of the Inflammation and Immunity Driver Programme. In each of these nations, BREATHE collaborated with Trusted Research Environments (TREs) and data providers to create cohorts of patients with chronic respiratory diseases, specifically: asthma, Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Lung Disease (ILD).
The DataLoch Respiratory Registry, currently covering South-East Scotland residents within the NHS Lothian catchment, holds additional information on Cystic Fibrosis and Wheeze (a common respiratory symptom). In England and Wales, the processes of linking further conditions to the registries is relatively straightforward, subject to governance and dependent on the inclusion criteria of specific research studies.