Following the launch of the DataLoch Respiratory Registry earlier this year, we are delighted to announce that our registry has been updated to include Asthma, Wheeze, and Cystic Fibrosis data from South-East Scotland. This update represents a significant step forward for respiratory-related research by more easily enabling research involving any of these conditions.
The data within the DataLoch Respiratory Registry have been aligned with those for England (CPRD) and Wales (SAIL Databank) to enhance the potential for research across the three nations. Development work is continuing that would see data from Northern Ireland joining this alignment.
If you would like to discuss any prospective projects with us, or to gain access to our Metadata Catalogue, please Connect with Us.
New data within the DataLoch Respiratory Registry
Initially, only Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Lung Disease (ILD) data from across primary and secondary care systems were included within the registry. We have swiftly added the following:
a) Asthma cohort – Now the largest collection of patients in the registry with nearly 180,000 people. Approximately 80% of these are identified solely through GP records.
b) Wheeze cohort – The third-largest of the five cohorts in the current version of the registry with nearly 40,000 people. This data could identify potential cases of childhood asthma, which may not be effectively captured within the main asthma cohort.
c) Cystic Fibrosis cohort – At 400 people, this is the smallest cohort in our registry.
d) Expanded demographics data – We now include all eligible Lothian residents within the registry, rather than solely those who appear in the condition cohorts mentioned above. This change will enable epidemiological studies that focus on how prevalent (or common) certain conditions are within the population and explore measures to prevent these conditions.
There is a growing need in both respiratory research and healthcare-innovation spaces for high-quality healthcare data to understand both population-level health and to improve management of conditions for individuals. Our paediatric asthma innovation project has benefitted hugely from the expertise at DataLoch. The recent addition of the Respiratory Registry has helped us to more easily define a cohort of children and young people with asthma, and then explore - using de-identified, high-quality data - the factors that directly influence the risk of attack.
Dr Kenneth Macleod, Consultant Respiratory Paediatrician, NHS Lothian
Simplifying data selection
For the DataLoch Respiratory Registry, we have created a simplified data-selection form, which streamlines the application process for projects seeking access to data solely within the registry. Several Respiratory Registry-related proposals are already progressing through our application and approvals processes.
Further plans
We continue to liaise with our registry partners on further plans to develop the DataLoch Respiratory Registry further. The inclusion of additional medications data, particularly applicable to asthma treatment, is being developed.
Acknowledgements
We would like to thank all those involved, particularly Professor Jenni Quint (Imperial College London), Professor Sir Aziz Sheikh, Dr Luke Daines, Dr Holly Tibble, Dr Wendy Inglis Humphrey (all University of Edinburgh), Dr Kenneth Macleod (NHS Lothian), and Chris Orton (Swansea University).
The development of the DataLoch Respiratory Registry was funded by MRC Capital Funding [MC_PC_22006] and was carried out with the support of BREATHE - The Health Data Research Hub for Respiratory Health [MC_PC_19004] in partnership with SAIL Databank and Imperial College London.
BREATHE was funded through the UK Research and Innovation Industrial Strategy Challenge Fund and delivered through Health Data Research UK.
