BTS UK ILD Registry comes to a close

BTS first launched its ILD Registry programme in 2013 and, since 2023, has provided a single registry for all ILD cases across the country. Following the planned review point earlier this year, the BTS Board has confirmed that the time is right to bring the UK ILD Registry project to a close.    

The Board considered a number of factors to inform this decision, including the changing clinical data landscape and the evolving needs of the respiratory specialism and ILD sub-specialism. The Board recognised the impact of the Registry on raising standards for ILD care across the country since its launch.

While the Registry will no longer collect data, the Registry dataset will continue to be an incredible resource for research, improving knowledge and raising awareness of ILD.

Dr Nazia Chaudhuri, Chair of the BTS ILD Registry Steering Group, says,

“We would like to thank all the hospital sites that have contributed to the Registry over the years. This has created a wealth of benchmarking reports, which have facilitated real and meaningful change within ILD services. The commitment and diligence of ILD clinicians have contributed to a greater understanding of the distribution, care pathways, and burden of these debilitating diseases.  We are also grateful to the many stakeholders who have supported this work, including patient charities such as Action for Pulmonary Fibrosis and Sarcoidosis UK. We look forward to continuing these valuable partnerships and exploring new ways to treat these debilitating diseases.”

Professor Richard Russell, Chair of the BTS Board, says,

“It is a testament to the participating centres that the Registry has grown into the largest global registry of its kind. Data from the Registry have been presented at national and international respiratory congresses and published in peer-reviewed journals. It has become an invaluable research asset that can advance research and address clinical questions. This work will not stop, and so we actively encourage researchers to submit data access requests to utilise this excellent resource to the maximum. This will lead to opportunities to focus on equitable care provision and the use of antifibrotics in ILD care.”

BTS remains committed to improving standards of care for those with ILD and to supporting the clinicians who care for them.

Read more about the timings for the Registry Closure and FAQ