Lung fibrosis researchers need you!

Together we can transform the lives of people with pulmonary fibrosis

This survey has now closed.

A huge thank you to everyone who has taken part and if you helped us spread the word. Our next steps are:

  • We will be holding a workshop to agree the final top 10 priorities based on what we've heard from you in mid June.
  • We will then be able to reveal the top 10! We will share this information on our social media pages at the end of June, keep a close eye on for more information.
About the survey

We are partnering with the James Lind Alliance and Imperial College London and a Steering Committee including patients, carers and clinicians.

  • Last year, over 800 of you told us what you wanted pulmonary fibrosis research to look like across the world, and we listened. Your views generated over 1,600 questions – thank you so much for your support! Now we're onto the final stage…
  • We’ve been working hard to analyse and categorise those results.
  • This feedback will directly set future priorities for generations of researchers in the UK and across the world, and ultimately one step closer to finding a cure.
We hugely value your experiences and the influence you will have on future research and the lives of anyone affected by pulmonary fibrosis 

Louise Wright, CEO Action for Pulmonary Fibrosis

Which research priorities are most important to you?

We wanted to identify the top ten research questions that remain unanswered in PF research. 


What happens when I’ve completed the survey?

After this survey has closed on 9th May, we will use the survey responses to work out which questions are the most important to people. We will then hold an online workshop for people with experience of pulmonary fibrosis, and healthcare professionals.

At the workshop they will discuss the most important questions in more detail and agree the top 10 questions that need researching.

What else can I do to take action for pulmonary fibrosis?

Thank you for your support.