How our research makes a difference: the Trust’s research impact report

Blog - from our Director of Research, Dr Lucy Allen -

Today we have published the our first Research Impact Report. In this blog Dr Lucy Allen, the Trust’s Director of Research, explains how this report was developed, an overview of what it covers and how funding from the Trust has made, and will continue to make, an impact for people living with cystic fibrosis.

In 2013 the Cystic Fibrosis Trust set out its first comprehensive research strategy, outlining a plan to fund a wide range of research topics that would fulfil the needs and improve the lives of people living with cystic fibrosis (CF), both now and in the future. International collaboration and multidisciplinary ways of working were key elements of this strategy, which was developed in consultation with the CF community, CF researchers and clinicians, under the leadership of Dr Janet Allen. The CF community’s top 10 health priorities, identified through a partnership with the James Lind Alliance led by Professor Alan Smyth, were incorporated into the 2018 strategy refresh as guiding principles in implementing our research strategy.

In the eight years since our first research strategy, people with CF’s lives have changed remarkably. The licencing of CFTR modulators and improvements in care and treatment have been transformative. However, many are not able to benefit from these medicines. We are determined to do all we can to ensure everyone with CF can live a long and healthy life, and we will be reviewing the direction we want to take our research and our priorities for the coming years in order to achieve this. In our first Research Impact Report, we review our achievements so far.

What does our Research Impact Report cover?

The Research Impact Report covers the achievements we have made in moving towards new treatments for CF since the publication of our first research strategy in 2013. It spans a huge range of topics including basic biomedical research, the UK CF Innovation Hub and the CF Syndicate in Antimicrobial Resistance. It runs from inspiring undergraduate biomedical students to pursue a career in CF research within our Summer Studentship scheme, to attracting world-leading professors to apply their skills and expertise to tackle specific issues in CF research. Overall, it gives context to how Trust-funded advances in research over the past eight years have made and will continue to make an impact for people living with cystic fibrosis.

Each research advance to understand, treat and ultimately prevent the symptoms and complications of CF represents years of investment, in terms of funding and knowledge and expertise. This means that the true impact of our research can be hard to demonstrate as immediate, tangible outcomes for people with cystic fibrosis. Within this report, we have therefore broken down the impact of our research into key impact areas: generating new knowledge, stimulating further research, attracting the brightest and best into CF research, and building evidence that changes how CF care is managed. Underpinning these key impact areas is the work we do to involve the CF community, and how they have influenced and shaped what we fund: from setting our research priorities and making funding decisions, to developing the research programme and sharing results.

Zoё Elliott, mum to two children with CF, highlights in her foreword: “I passionately believe in people with lived experiences driving forward research, and the CF community have been an incredibly loud and powerful voice in establishing what the research priorities should be. I’m delighted to see throughout this report that the Trust is funding research towards answering these priorities: answers which will create tangible, day-to-day differences, not just for people with the condition, but for their loved ones and their families in years to come.”

Thank you to our incredible fundraisers, challenge and event participants, and volunteers and donors, including our branches and fundraising committees who are so very generous with their time and support. The money you raise can help us to create a brighter future for everyone affected by cystic fibrosis.

You can download a copy of the report from our website.

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