March 07, 2025
The British Thoracic Society (BTS) has recently shared the findings from the IPF Registry which has been collecting data since 2013. Information was gathered from 5,052 people across 64 centres, including 13 specialist Interstitial Lung Disease (ILD) centres, 40 secondary care centres in England, and 11 secondary centres from devolved nations.
A patient registry is a survey that collects information about people with a specific medical condition. The information is collected by healthcare professionals, and it is then held on a secure and confidential computer database.
Key highlights from the report:
- Delayed diagnosis can impact survival: Many patients experience symptoms for over a year before receiving specialist care, with many waiting more than 2 years, reducing their survival chances if they don’t have access to the most appropriate care.
- Access to specialist care is limited: Long wait times and restricted access to antifibrotic treatments in non-specialist centres create barriers to timely treatment.
- Changes in clinical practice: Fewer lung biopsies are being done to confirm diagnosis, leading to less invasive procedures for patients. Antifibrotic use has increased, reflecting a shift in how IPF is diagnosed and managed.
- Low participation in clinical trials: Only 7.5% of patients are involved in research. This could limit the development of new treatments.
- Lung transplants remain a challenge: More patients are deemed ineligible for transplant, reducing treatment options.
These findings reflect what we hear from people living with pulmonary fibrosis. They face significant barriers to diagnosis and accessing treatment and care. This report clearly demonstrates the need for improvements to services for those living with pulmonary fibrosis.
Bradley Price, Director of Policy & Public Affairs and Acting Director of Research, Action for Pulmonary Fibrosis
Representing the patient voice
A key role in the BTS Registry is ensuring that people affected by pulmonary fibrosis (PF) have their voice heard and perspective included. Action for Pulmonary Fibrosis (APF) plays a vital role in this effort, with a representative who sits on the Steering Committee advocating for people affected by PF. This helps to ensure that findings from the registry translate into meaningful improvements in care and support for those living with IPF.
The report highlights the changes we are championing, including wider access to antifibrotic medication. It also emphasises the urgent need to improve early diagnosis, expand specialist care, and enhance research efforts to improve outcomes for people living with IPF in the UK.
So, what’s next?
Action for Pulmonary Fibrosis are supporting key areas that will drive change:
- We are helping to improve access to information about research and the opportunities to get involved or take part in studies. Our Study Finder lets our community see all the research opportunities available to them.
- We are actively supporting researchers through grant funding and providing access to our Involvement Network. This will ensure the voice of people affected by PF is at the heart of their research design and delivery, making it easier for people to take part.