Are you passionate about shaping research into pulmonary fibrosis?
Shaping future research into pulmonary fibrosis
APF is delighted to be 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 an exciting and one-off opportunity for anyone connected to pulmonary fibrosis to shape the future of research.
The first phase of our JLA survey is now closed. We were delighted to receive over 900 responses from patients, carers, relatives and healthcare professionals. We are incredibly grateful for everyone who took part.
What happens next?
This is just the first phase of the JLA initiative. There will be the opportunity for anyone affected by pulmonary fibrosis to take part in the next steps. We will keep you updated on each stage and how you can get involved.
Dr Laura Fabbri, Clinical Research Fellow at Imperial College London, is now working hard on analysing the data. Laura (pictured) says:
“I’ll be looking at every single entry and collating the data into topics. Then we’ll further refine the topics into research questions that will be checked against the current scientific evidence. This is to see if your questions have already been answered or still need to be investigated.”
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.
Ian Foote, who runs the Newcastle PF Support Group commented:
“For most of us, this will be a once in a lifetime opportunity to put the diagnosis, treatment and care of this condition to the front of the queue, thus hopefully making a significant contribution based on our own experiences for the benefit of others. The survey is simple and will be available online or in hard copy, with help available for on line conversion for those without appropriate facilities. Let’s see if we can do everything possible to help future sufferers with this dreadful disease.”