Enabling people with CF to live longer lives
Over the last 20 years we have seen an increase in the number of adults living with CF. Our UK CF Registry shows that more than one in ten people with CF are now aged 40 or above (from UK CF Registry Annual Data Report 2023), as advances in treatment increase life expectancy.
However, as people with cystic fibrosis live longer into adulthood, they are encountering new challenges and issues. In December 2023, the Trust hosted a workshop where over 50 people, including researchers, healthcare professionals, funder representatives, staff from the Trust and representation from the CF community, began conversations around growing older with CF. A summary of the workshop is published in our Growing older with CF report.
Read our Growing older with CF report
We are funding research to find out more about the many unknowns about the health of people with CF in the future, from pregnancy, childbirth and parenthood; to the risks of developing diseases of older age such as cancer and cardiovascular disease.
Some examples of areas of research we are currently funding are listed below.
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Understanding cancer and CF
There is some evidence to suggest that people with CF may be more at risk of developing cancer than the general population and may develop it at an earlier age. More information about this can be found on the cystic fibrosis complications page of our website.
We are funding an SRC programme led by Professor Stephen Renshaw at the University of Sheffield to investigate links with CF and bowel cancer on a molecular level in the lab. Alongside this, the SRC team are also exploring whether a class of existing and well used drugs could be beneficial in preventing any damaging effects of the CF protein towards developing bowel cancer.
Read more about this topic:
Q&A with Professor Daniel Peckham on risk of people with CF developing cancer
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Learning more about the risk of developing cardiovascular disease
It is possible that people with CF may be at increased risk of developing cardiovascular related conditions, such as high blood pressure or heart disease. More research is needed to understand these risks in more detail. With funding from a Trust Development Award, Dr Freddy Frost is studying which individuals with CF might be most at risk of heart disease. This study is known as ‘ITCH-CF’.
In one study he will look at whether full-body imaging scans could be used to assess future risk of heart disease. In another study, Dr Frost will examine existing health records for more information about risk.
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Developing evidence-based information on pregnancy, maternal and infant health
Access to modulators has led to increases in the number of women with CF having children. More research is needed to ensure people can make informed decisions in this area. This ranges from decision making about becoming pregnant, to the best way for women to manage their pregnancies and parenthood, and ensuring the best health of their children.
Led by Dr Imogen Felton and Professor Jane Davies at the Royal Brompton Hospital in London, a group of researchers and doctors with wide-ranging expertise have been awarded a Cystic Fibrosis Trust-funded Strategic Research Centre grant, known as the MATRIARCH-SRC. The results of their research will be used to provide evidence-based information, in an easy-to-use and easy-to-understand way for women with CF and their families to help them decide what is right for them. It will also support CF teams and non-CF clinical teams across the country to support and care for women with CF and their newborn children.
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Digital health
Everyone with CF is likely to have a different experience of the condition. Our digital health research programme is exploring how health data from people with CF might be used to improve day to day health, predict flare ups (exacerbations) in lung health and anticipate future complications.
This research programme will investigate the feasibility and psychological aspects of collecting sufficient and timely information about day-to-day changes in someone’s health, explore which are the most important measures of health to monitor, and look at whether changes to current models of care are safe and acceptable.
Research we fund
We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.
Clinical Trials Hub
Find everything you need to know about CF clinical trials, what's involved in taking part and how we support them.
Our research goals
Through our research goals we will accelerate progress towards a future where everyone with CF can live a life unlimited.