APF is partnering with the James Lind Alliance, the University of Nottingham and Imperial College London to identify the top ten priority areas for pulmonary fibrosis research. This is a one off opportunity for anyone connected to pulmonary fibrosis to shape the future of research.
We’re delighted to have the views of over 600 people with our first survey which was shared early 2021. This has resulted in an incredible 1,400 questions. Thank you for your support! There will be the opportunity for anyone affected by progressive pulmonary fibrosis to take part in the next steps.
What happens next?
• Dr Laura Fabbri, Clinical Research Fellow at Imperial College London, is now working hard on analysing the data which includes coding and categorisation.
• The Steering Group meets again in mid November to review the summary questions and this work will continue in pairs after the meeting aiming to complete mid December.
• We’re working towards launching a second survey early 2022.
There’s been a terrific response to the first survey. The high number of people who took part in the first stage of our consultation demonstrates there’s a really engaged community that cares about the future of progressive pulmonary fibrosis research. I hope we’ll be able to continue to draw on that energy and enthusiasm as we move into the next stage of the project, to identify their priorities and shape the agenda for the future of research.
Why is this research setting so important?
Progressive pulmonary fibrosis care is an under-researched area and requires greater attention. Your feedback will directly set future priorities for researchers in the UK and across the world.
This will set the gold standard for future generations of researchers into pulmonary fibrosis and ultimately one step closer to finding a cure.
Louise Wright, CEO of APF says:
We are overwhelmed with the support for our first JLA survey. We hugely value your experiences and the influence you will have on future research and the lives of anyone affected by pulmonary fibrosis. Thank you for your support.
The steering committee
The project is being guided by a Steering Committee including patients, carers and clinicians.
Tom McMillian, a carer from Northern Ireland said:
'I’m extremely proud and feel privileged to be a member of the James Lind Alliance (JLA) steering committee as a carer representative. It is my firm belief that the intended holistic approach being taken by the everyone involved will lead to improvements inpatient care, carer support and help guide future research.
My involvement with the steering committee leads me to believe that the concerns, fears and uncertainties of carers everywhere in the UK will be addressed as never before.