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NIHR to fund CF community’s research priorities

Last week the National Institute for Health Research (NIHR) published a call for research applications based on the priorities that the cystic fibrosis (CF) community identified as important to them. So which vital topics in CF research (as identified by you) has the NIHR agreed to fund, and how you can continue to get involved in shaping future research? Read on to find out.

Which topics will the NIHR fund?

The NIHR has broadly described the area of research that it would like to fund as ‘research into the clinical and cost-effectiveness of interventions to improve the management of CF and its complications. Within this heading, they’ve listed some topics that they are interested in seeing more research into. These topics overlap with six of the top 10 research priorities that the CF community identified in the Question CF project. They are:

  • How can we relieve gastro-intestinal symptoms, such as stomach pain, bloating and nausea?
  • What is the best treatment for non-tuberculous mycobacterium (including when to start and what medication)?
  • Which therapies are effective in delaying or preventing progression of lung disease in early life?
  • Is there a way of preventing CF-related diabetes?
  • What effective ways of motivation, support and technologies help people with CF improve and sustain adherence to treatment?
  • Can exercise replace chest physiotherapy?

Professor Alan Smyth at Queen’s Medical Centre in Nottingham who led Question CF said: ‘It’s fantastic to see that the NIHR has adopted many of the research priorities from the Question CF project for this research call. Thanks again to the CF community for taking part and telling us the research questions they’d like to see answered. The next stage is for researchers to work with the CF community to design research studies to address them.”

How can you get involved?

If this news has inspired you to get involved in sharing your views on research – either for the first time or again if you’ve contributed before – there are a few ways that you can do this:

1. Tell researchers how they can simplify the treatment burden

Firstly, as you may have read on our website, the Question CF team is back with part two! This time, they’d like to hear more about your top priority: ‘What are the effective ways of simplifying the treatment burden of people with CF?’. You can contribute your thoughts by completing this online survey by 21 April. Over the next 12 months, the Question CF team will be exploring three more questions with the CF community. Please look out for the invitations to get involved on our website and on Twitter @questionCF.

2. Join a focus group

Like the Question CF team, the NIHR also feels it’s important to listen to the CF community about research. The NIHR requires that all of the research proposals submitted to them have had input from people affected by cystic fibrosis. At the Trust, we are helping to support this by organising focus groups on behalf of researchers, and we would love you to get involved. You can register your interest in taking part in one of these focus groups on our website.

Calling all researchers

The deadline for submitting funding application is in September 2018, so researchers, you’ve got spring and summer to get your ideas in order and sense check them with the CF community! Full details of the research call are available on the NIHR’s website.

If you’d like some help to get the input of the CF community on your proposal, please get in touch with us using the email address clinicaltrials@cysticfibrosis.org.uk

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