June 21, 2022
· Today (21 June 2022): Action for Pulmonary Fibrosis (APF) is delighted to announce the Top Ten Progressive Pulmonary Fibrosis Research Priorities, agreed by patients, carers and clinicians.
· The news was announced on Tuesday 21 June at the Margaret Turner Warwick Centre for Fibrosing Lung Disease Lecture with APF’s President Professor Gisli Jenkins and APF research fellow Dr Phil Molyneaux at Imperial College London.
· This Top Ten List – developed using the James Lind Alliance’s Priority Setting Partnership method in collaboration with Imperial College London, will ensure future pulmonary fibrosis research focuses on the areas that matter most to people who live with the condition, and those involved in their care and treatment.
· APF are taking action today on the Top 10 priorities and have opened their Fellowship Call 2022 seeking applications from exceptional researchers with two grants up to £300k. The deadline for ‘expression of interest’ is Friday 9 September.
People living with pulmonary fibrosis, their families, clinicians and others joined forces to determine the future of research. The Priority Setting Partnership questions were refined through a rigorous and collaborative process, including two intense workshop days with stakeholders to agree on the final ten.
The Top Ten Progressive Pulmonary Research Priorities are:
1. How to improve accuracy and time taken for diagnosis.
2. New treatments to slow, halt or reverse progression.
3. How to improve speed and accuracy of diagnosis in primary care.
4. Best time for interventions to preserve quality and length of life.
5. Best treatments for cough in pulmonary fibrosis.
6. Early treatment to delay progression, lung decline and improve survival.
7. Which therapies improve survival in pulmonary fibrosis.
8. Which treatments reduce breathlessness and phlegm production.
9. Extent and impact of different interventions on length of life.
10. New treatments and delivering drugs with reduced side effects.
Louise Wright, CEO of Action for Pulmonary Fibrosis, says:
“We’re delighted to announce the Top Ten research priorities for this devastating and incurable disease. The Priority Setting Partnership offered a unique opportunity for people with lived experience of pulmonary fibrosis to define the future of research. We’re hugely value their experiences and views.”
Ruby Rai, whose mother died of pulmonary fibrosis, says:
“I am truly grateful to APF for allowing me to be part of this research campaign. It really feels like a landmark moment for pulmonary fibrosis. Being involved in the process was both an empowering and emotional experience. Although it may be too late for sufferers like my mum, I hope this research takes us one step closer to finding better treatments, raising awareness and ultimately finding a cure for this horrible and cruel disease.”
Find out more about the results here.
Further information and interview requests:
Emma Pelling, emma@pellingpr.co.uk, 07958 558172
https://www.actionpf.org