Are you passionate about shaping research into pulmonary fibrosis?
We are calling on you to be pioneers in a truly unique opportunity from the James Lind Alliance to set the priorities for future research.
This is a one-time opportunity for you to shape future research into pulmonary fibrosis across the world. By completing this survey we will ensure that patients, carers, bereaved family members and clinicians are at the heart of pulmonary fibrosis research.
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
About the survey
A paper survey with Freepost is available, please contact us to request a copy by post.
The survey will be open until 10 May 2021 but we’d like as many people as possible to complete this survey over the next month. We will keep you updated on how we progress and give you feedback.
Louise Wright, our CEO says:
Every single view matters. We hugely value your experiences and the influence you will have on future research and the lives of anyone affected by pulmonary fibrosis.
Why is this survey so important?
Progressive pulmonary fibrosis care is an under-researched area and requires greater attention. There are many unanswered questions to be addressed. Your feedback in this survey will directly set the future priorities for researchers not just in the UK but across the world.
This couldn’t be more relevant as we experience a global pandemic with more people potentially affected by lung scarring. As we live through these challenging times it is more important than ever that researchers address the highest priority questions which will bring direct and tangible benefits to patients, carers, families and friends.
By completing this survey you are setting the gold standard for future generations of researchers into pulmonary fibrosis.
The notion of the Progressive Pulmonary Fibrosis PSP was originally developed by Professor Gisli Jenkins ands supported by APF. Professor Gisli Jenkins, the lead clinicians on the survey, says:
“Progressive pulmonary fibrosis represents the chronic evolution of a series of rare pulmonary conditions, commonly known as interstitial lung diseases (ILDs). These diseases are often underdiagnosed, and their exact prevalence is not known.
The aim of this survey is to identify the unanswered questions about progressive pulmonary fibrosis, from patient, carer and clinical perspectives, and then prioritise those
These diseases are often underdiagnosed, and their exact prevalence is not known. The scope includes questions about diagnosis, and also treatment and management of the disease (daily living at every stage) before and after the diagnosis.”
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.”