New findings from the UK Interstitial Lung Disease Registry provide critical insights into Idiopathic Pulmonary Fibrosis care

20 February 2025

The British Thoracic Society (BTS) has published findings from the UK Interstitial Lung Disease (ILD) Registry, offering insight into the diagnosis, treatment, and management of Idiopathic Pulmonary Fibrosis (IPF) across the UK.

IPF is a form of lung disease that causes scarring (fibrosis) of the lungs; people living with IPF have a poor prognosis and symptoms that significantly impact their quality of life.

Since 2013, the Registry has collected real-world clinical data on over 5,000 IPF patients from 64 centres across the UK. These findings provide valuable insights into patient demographics, diagnostic trends, and treatment patterns, shaping the future of IPF care.

Key findings from the Registry published today in the BMJ Open Respiratory Research Journal include:

Patient demographics
IPF is more prevalent in men (77.8%), with an average age of 74 years. Over half (66%) were ex-smokers, and 76% had at least one co-morbidity.

Delayed diagnosis
Over a third (36.7%) of patients experienced symptoms for more than two years before their first specialist appointment.

Shifts in diagnostic practice
The use of surgical lung biopsies decreased from 14% in 2013 to 5.5% in 2022, reflecting a shift towards less invasive diagnostic approaches.

These data reflect changes in clinical practice, and the findings highlight the ongoing need for improved diagnostic pathways, earlier access to life-extending therapies, and increased research investment to improve patient outcomes.

The Registry’s long-term data aims to help benchmark national standards of care and increase nationwide understanding of the disease, ultimately improving patient care. The study underscores the importance of ensuring that IPF patients receive timely diagnosis, access to specialist care, and opportunities to participate in research that could improve quality of life.

Lead author of the paper, Dr Ahmed Fahim said;

“It is exciting to present a decade of data from the BTS Registry on patients living with IPF. It describes changing management trends in pulmonary fibrosis over time and highlights the importance of workforce expansion to deliver high-quality care and improve clinical outcomes.”

Find out more about the UK ILD Registry here.

Read the published findings.