2023 marks ten years since the launch of the British Thoracic Society (BTS) Interstitial Lung Disease (ILD) Registry, which collects data on the diagnosis, treatment and outcomes of patients with Idiopathic Pulmonary Fibrosis (IPF) and Sarcoidosis across the UK. Today, BTS releases a report summarising the current status of IPF and Sarcoidosis across the four nations, and reflects on the changes over the last decade, particularly in terms of diagnosis.
The BTS UK ILD Registry now includes 88 individual sites representing over 7,700 individuals with a range of ILDs. This report focuses on the first decade of the Registry, representing almost 6,000 individual patients with IPF or sarcoidosis. By collecting and consolidating patient information, the Registry provides the opportunity to identify trends and correlations in ILD that may otherwise go unnoticed. Earlier this year, the Registry saw an amalgamation of the BTS UK IPF and UK Sarcoidosis registry databases. It also expanded to include patients not just with IPF but with any other fibrotic lung disease. As the Registry continues to grow, so will the opportunities to prevent, treat and manage the condition.
Dr Clare Hodkinson, Research Manager at Action for Pulmonary Fibrosis commented,
“Action for Pulmonary Fibrosis fully supports the work of the BTS UK ILD Registry and are proud to represent the patient voice on its Steering Committee. For patients, participation in the Registry offers the opportunity, at no additional burden to themselves, to make an important contribution to the development of treatment and care guidelines and to facilitate research to better understand unmet patient needs in ILD. The BTS UK ILD Registry is uniquely positioned to make meaningful inferences, drawing on insights into real world views of variations in clinician practice and patient outcomes to support improvements in NHS service and care pathways. We are encouraged by the Registry’s expansion to include all fibrotic-ILDs, which reflects evolving understanding of, and treatment of ILD in recent years. We hope that this will provide richer representation and increased opportunity to improve the lives of all those living with ILD.”
The main goal of the Registry at inception was to improve the quality of care for patients affected by ILD, in turn improving their quality of life. Ten years later this goal has certainly been realised; the data showing that it has already impacted patient lives through the facilitation of research, increase in understanding and improvements in clinical practices in ILD.
Leo Casimo, Senior Executive of SarcoidosisUK added,
“SarcoidosisUK supports the BTS ILD Registry, and we are proud to represent sarcoidosis patients on its Steering Group. The Registry is a vital tool for researchers, medical professionals, and policymakers to better understand sarcoidosis and other ILDs. We urge hospitals and patients to share their data so that the Registry is as comprehensive as possible.”
Recruitment into the ILD Registry is ongoing, and there are several ways to get involved as a clinician, researcher or patient. Data is also able to be added retrospectively, maximising the opportunity to build an accurate and representative evidence base. Further information about becoming involved in the Registry can be found here.
Dr Nazia Chaudhuri, Chair of the BTS Lung Disease Registry Steering Group, summarised,
“The BTS ILD Registry is one of the largest of its kind in the world and is a testament to the hard work and collaboration between health care professionals and patients. We are seeing the commitment and enthusiasm growing from year to year and hope to work on the next chapter of the Registry’s journey. We will work with healthcare professionals, charities and patients to continue to develop the Registry with the vision of enhancing engagement and sustainability. The Registry is a valuable tool that can be used to level-up the care received by patients with pulmonary fibrosis across the UK.”
Ten years on and the desire to make the Registry relevant to all people with, and caring for those with, ILD remains. BTS will continue to support the ILD registry initiative in line with its ultimate objective – Better lung health for all.
The 10 year report is available to read here.
London, London WC1N 2PL
13/12/2023 14:50:40
British Thoracic Society
