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Whilst BREATHE is not currently active, our Hub’s philosophy of collaboration lives on through the establishment of three respiratory data registries in England, Scotland, and Wales, with partners continuing to work together and build on their achievements and the resources created.

1 in 5 people across the UK has a long-term respiratory condition.

We are fortunate in the UK to have some of the best health datasets in the world, which can offer opportunities to transform health and care – but these are often difficult to find, access and use.

At BREATHE, we wanted to improve respiratory health by changing the way the NHS, researchers, industry and charities use data. We did this by:

  • Bringing together useful respiratory datasets, so they can be easily discovered by researchers and innovators.
  • Curating and improving these datasets, providing access to the highest quality data.
  • Providing services and expertise to drive the use of health data in ground-breaking research and innovation.
  • Working in partnership with patients and the public to promote the responsible use of health data for patient benefit, protecting privacy at all stages.


  • 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.

  • At BREATHE, we remain passionate about health data and enabling others to utilise their full potential.

    We worked with a range of organisations and individuals, including academic researchers, charities and third sector organisations, SMEs and larger industry partners.

    Our network grew with the addition of Supporting Partners, who aligned with our vision of enabling better respiratory health through better connected data. This included the Cystic Fibrosis Trust, Diveplane, IQVIA, Oxford-Royal College of General Practitioners Research and Surveillance Centre, and PrecisionLife.

  • We believe health data has a crucial role to play in the improvement of respiratory health in the UK. As such, we maintained patient and public input at all stages and levels of BREATHE activity.

    From the seed of an idea, to establishing and growing the Hub, patients and members of the public have been involved in BREATHE every step of the way. These partnerships were fundamental to improving our work and strengthening our impact.

    Both our External Advisory Board and Executive Team included lay representation, ensuring that the strategic direction of the Hub continued to be shaped and guided by patients and the public.

    All applications to access BREATHE data via our Trusted Research Environment (TREs), SAIL Databank, were reviewed by members of the public. They helped us to focus on research that will have the biggest impact on respiratory health in the UK.

Synthetic Data Guidance