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Refreshing CF research priorities – our next steps

Feature - 05/05/2023

The identification of a refreshed top 10 of CF research priorities at the end of last year was a defining moment for CF research – a moment that so many of you contributed to. The priorities will help us continue to champion research that will make a difference to the lives of people with CF in the future. Here we explain what’s happened so far.

What research is already underway to address these research priorities?

Over 900 questions about CF were submitted as part of the project to refresh your CF research priorities. An important step to identify your top 10 refreshed research priorities was to check if your questions had been answered already. This check was based on completed research studies.

Now we’re in the process of checking whether there are ongoing research studies that may address some of these research priorities in the near future. This might be research studies that the Trust is funding through our research awards, studies funded by the National Institute of Health and Care Research (NIHR) and other government-funded research councils at UKRI and research that is funded through other research charities.

When this funding ‘map’ has been completed, as a first step, we can focus on the research priorities where little research is already ongoing.

Spreading the word about what these priorities are

In order to develop new studies that address the research priorities, we’re working hard to ensure that as many scientists and clinicians as possible know what the refreshed research priorities are and understand the topics raised in these summary questions.

To do this, the detailed data analysis from the project has been shared on the James Lind Alliance website, and more information is available on the Trust and QuestionCF websites. The results are also being shared at scientific conferences and in research reports (research papers).

It is important that we share these questions with as wide a group as possible, as some of the questions are likely to require a wide range of expertise – including scientists and clinicians who haven’t worked in CF research previously.

How can we address these priorities through research

Another way to think about the refreshed top 10 research priorities is ‘unanswered research questions’. Like questions asked in day-to-day life, for example, those of a curious toddler, finding answers is not easy – in some cases, it can be hard to know where to start!

To help researchers work out the best way to answer these research questions, the Trust will be holding workshops throughout this year to discuss the refreshed research priorities and how researchers might address them. The workshops will be an opportunity for experts in different areas to pool their ideas and knowledge and to meet and develop plans with those with complementary knowledge and skills.

We hope that they will form new partnerships to design research studies to address these research questions.

Working with other organisations to fund research to address CF research priorities

Partnerships and collaborations in research are essential for us to achieve a life unlimited for people with CF. We will be talking to organisations where we are already co-funding research studies, and exploring new opportunities for partnerships, to fund research at universities, hospitals and biotech and pharmaceutical industries to address your CF research priorities.

There are so many aspects of CF that urgently need to be investigated by research to improve the lives of everyone living with CF. The refreshed research priorities will guide CF research for many years into the future, and we’re working hard behind the scenes to set us in the right direction now. We are delighted so many of you shared your questions about CF research, thank you
Dr Lucy Allen, Director of Research and Healthcare Data

The CF research priorities refresh project was a partnership between the Trust, colleagues at the University of Nottingham and the CF community. It was facilitated by the James Lind Alliance team at the NIHR.

To find out more about the project you can read the March 2023 edition of our CF Life magazine.

A really big thank you to everyone who took part in the surveys and workshops and helped spread the word about this important project to help us refresh the CF research priorities.

If reading this has sparked an interest in having your say in other CF research projects, please visit our involvement page to find out more, or get in touch with our Involvement team.

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