UK ILD Registry: National Dataset
The UK Interstitial Lung Disease (ILD) Registry is one of the most comprehensive clinical datasets on interstitial lung disease in the world, running continuously for 13 years from 2013 until its closure in June 2026. It operated thanks to clinical and administrative staff of ILD teams across the NHS inputting data on a daily basis, and, of course, thanks to the thousands of patients who agreed to take part.
The Registry grew from two separate registries for Idiopathic Pulmonary Fibrosis and Sarcoidosis into a single resource covering all fibrosing ILDs. The Registry holds data on over 12,000 patients from 107 hospitals across England, Scotland, Wales and Northern Ireland.
These data are now held in an archived research database and remain available to researchers for future study.
For researchers
The Registry holds detailed demographic, clinical and annual follow-up data on patients with ILD, including diagnosis, family history, lung function, treatment, comorbidities, and blood test and biopsy results, collected from initial presentation onward.
This dataset is available to researchers for a small fee. As of June 2026, 19 successful applications have been made, resulting in 22 publications that have been cited 106 times by other researchers, addressing topics including gender and ethnic disparities in IPF and sarcoidosis care, the effect of comorbidities on IPF mortality, and the impact of social deprivation and distance from specialist services on patient outcomes.
As the Registry moves into its archive phase, ensuring continued access to this evidence base remains a priority, so the dataset can keep supporting high-quality research into ILD.