After thirteen years, the British Thoracic Society’s Interstitial Lung Disease Registry has closed and is no longer collecting data.
Dr Nazia Chaudhuri
The registry’s latest annual report [available here] highlights its achievements in 2025, including 11 new research publications using its data, three successful applications to access the data for research, and more than 2,000 new cases added.
Dr Nazia Chaudhuri, Senior Clinical Lecturer at Ulster University School of Medicine and Respiratory Physician at Altnagelvin Area Hospital Western Health and Social Care Trust in Londonderry, has been chair of the Registry Steering Group for the last three years. She spoke to the limbus about the history, impact and legacy of the registry.
When and why was the BTS UK ILD Registry established?
The registry started off in February 2013, initially as an idiopathic pulmonary fibrosis (IPF) and sarcoidosis registry. Then in 2023 it became a registry on fibrotic ILDs, driven by the approval of an antifibrotic for progressive pulmonary fibrosis. We are now the largest ILD registry globally, with over 11,000 patients.
When it was first set up, there was very little information about the epidemiology of IPF and sarcoidosis in the UK, but the registry has enabled us to understand the incidence and prevalence of these conditions, the patient demographics, the types of treatments patients are receiving, and many other factors.
What has been your focus during your time as chair?
During my tenure, I have tried to focus on making sure that the registry has a clinical impact, rather than just being a delivery tool.
One of the key drivers was to provide healthcare providers with some benchmarking data. All of the trusts registered have unique identifiers that only they know, so that when we publish the annual report they can see important metrics – like how long it takes for patients to get an MDT diagnosis or how long it takes for them to get a clinic appointment – and benchmark themselves against other trusts and national data.
We also wanted more publications, so we encouraged clinicians to apply to access the registry to use the data to ask important research questions. You can see in the report there have been a number of paper publications as well as lots of abstracts in conferences.
Do you know of changes that have come about from the benchmarking?
We were hoping that trusts which were not meeting the national standard could use the benchmarking tool to help them have open discussions with managers about why they’re below the standard.
I know of services that have been able to use their dashboard data to improve by investing in resources, infrastructure or administrative support.
What are some examples of research that has come from the registry?
Registry data has been able to highlight disparities in care. One publication showed that a patient’s distance from a specialist centre correlated with worse outcomes, which is concerning and needs further evaluation as there may be many reasons for this. This may have contributed to NHS England’s decision to try to expand the approval of tier two services, so more services can prescribe antifibrotics rather than just specialist centres.
Also, a number of papers on which I’ve been senior author have looked at gender disparities in care for IPF and sarcoidosis and tried to understand why females may be at a disadvantage to males with regards to treatment access.
Why is the registry closing?
It was a decision taken by the BTS board, which obviously has to look at the whole BTS strategy, the financial impact of the registry on their overall vision and aims, and its continued value.
The ILD registry has increased our knowledge substantially over its lifetime and we now have specialist centres that deliver fantastic care and patients have access to treatments. But there are lots of subspecialties within respiratory medicine that don’t have registries, like occupational lung disease or sleep. It isn’t in BTS’ strategy to have 30 different registries, so the decision is being fair to these other specialities.
We have also heard that the National Respiratory Audit Programme (NRAP), who carry out an asthma and COPD audit, are very keen to take ILD on. That’s an amazing opportunity because NRAP comes with a certain amount of resources and it would mean that trusts have to contribute data, which was not the case with the registry because it sat outside the NHS and had limited local resource.
It would mean we will continue to get good quality data about metrics that are important to patients, such as how long it takes to get to see a doctor, how long it takes to get a diagnosis, or whether there is access to pulmonary rehab or oxygen.
What are the important findings from the latest annual report?
It highlights that there is still heterogeneity because there are trusts that are below the national benchmark, meaning patients are getting different care from trust to trust. So there is still a need for further exploration as to the reasons for this and some investment in the delivery of ILD care so that trusts that fall below the benchmark can improve on the care that they deliver. But there isn’t a national strategy for that.
That’s where NRAP could come in. It would be great to have a national strategy where any trusts that are not meeting the benchmark are supported to improve their MDT outcomes or shorten the time to seeing a clinician, for example. It’s important that the data is used to help trusts improve the care they deliver for patients, rather than as a tool to reprimand them for doing it wrong.
Do you have any other reflections on the ILD registry?
It’s been a great achievement to have an ILD registry for so long within the BTS. When you think about all the other subspecialties that don’t have a registry, we’re very privileged to have had that opportunity.
Because it wasn’t centrally funded, we’ve relied on goodwill from the trusts to enter their data, so I’d like to thank all the nurses, doctors and patients who have contributed to the registry, because without them we wouldn’t have the data that we do.