Cystic
Fibrosis,
Seen
Clearly
New scans show what
was previously invisible
but how do we help
people make sense of it?
SBR Project ID
#HM03
Date of project
September 2023–October 2026
Location
United Kingdom
Type of project
Applied Health Research
CategoRies
Tags
This project is sponsored by:
Cystic fibrosis (CF) is a lifelong genetic condition that, for most people who have it, means a complicated and closely monitored relationship with their lungs. For decades, that monitoring has relied on repeated spirometry and CT scans – useful, but limited. Spirometry reduces lung function to a single number. It’s quick and practical, but it misses a great deal. It can’t show where in the lung damage is occurring, or how different regions are being affected.
Xenon lung MRI is changing that – it produces vivid, detailed images that map ventilation across the whole lung – catching problems earlier, tracking treatment responses more precisely, and giving people with CF a far richer picture of their own health.
But that richness comes with a challenge: people with CF can be left uncertain about what their scans mean for their health and care, while clinicians have little guidance on how to explain findings that are personally significant, but may be unexpected.
This project – led by Dan Beever at the University of Nottingham as part of the MAGNIFY research programme – aims to understand what good communication looks like and to build practical resources to support it. The main output of that work – an interactive toolkit – is now live: explore it here.
150k+
People
are estimated to be living with CF globally
1 in 25
of us
carry the faulty gene
2000+
identified mutations
of the CF gene
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AIMS
What we want to know
How should lung MRI scan results be communicated to people with cystic fibrosis – and what do patients, carers, and clinicians actually need in order to understand and act on them?
Importance
Why it matters
Unlike standard breathing tests, lung MRI uses inhaled hyperpolarised Xenon gas to produce vivid images showing exactly which parts of the lung are ventilating well and which aren’t. For a person with CF, seeing that map for the first time can be striking – and sometimes alarming. A result that looks routine on a spirometry printout can appear starkly visible on an MRI scan. Without the right support, that moment can be frightening rather than informative.
Good communication doesn’t just make people feel better – it affects the decisions they make about their care, their willingness to engage with monitoring, and their relationship with their clinical team. As lung MRI moves from research settings into routine clinical practice across CF centres in the UK and beyond, the need for clear, tested guidance on how to share results will only grow.
Earlier detection
Lung MRI can detect changes in the CF lung before they show up in standard breathing tests – offering an earlier window to intervene.
BETTER MONITORING
Because lung MRI uses no radiation, scans can be repeated frequently – making it possible to track disease progression and treatment response.
INFORMED PATIENTS
Detailed results are only useful if people understand what they mean. Clear communication tools can help people with CF take an active role in their own care.
Project
So we set up a study
There are four phases:
Phase 1: Survey & literature review
We survey people with CF, carers and healthcare professionals to understand their experiences of receiving imaging results, including MRI. We also review research papers to understand communication factors beyond just CF. Recruitment now closed.
Phase 2: Focus groups
People with CF, carers, and healthcare professionals share their experiences of receiving and discussing imaging results, including MRI – helping identify what resources are needed. Recruitment now closed.
Phase 3: Toolkit co-development & refinement
The toolkit is built and tested with the same groups – refining the resources until they are genuinely useful in practice. Recruitment now closed. Toolkit now available →
Phase 4: Second survey
A survey of CF centres is undertaken to understand how lung MRI and other imaging technology is currently used. This will provide understanding as to how the toolkit might be used. Currently ongoing
FAQ
Frequently
Asked
Questions
Q: What is Cystic Fibrosis?
A: Cystic fibrosis (CF) is a genetic condition caused by a faulty gene that affects the movement of salt and water in the body’s cells. This causes a build-up of thick, sticky mucus, particularly in the lungs and digestive system. CF affects around 10,800 people in the UK. There is currently no cure, but treatments have improved dramatically – especially newer drugs called modulators, which target the underlying cause of the condition for many people with CF.
Q: What is Xenon lung MRI, and how is it different from a normal breathing test?
A: A standard breathing test (spirometry) measures how much air someone can blow out and how fast. It gives a useful overall picture, but it’s a single number – it can’t show where in the lung the problem is, or how different parts are being affected. Lung MRI uses powerful magnets to create detailed images of the lung’s structure and function. When combined with an inhaled gas called hyperpolarised Xenon, it can show exactly which areas of the lung are well-ventilated and which aren’t. Because it uses no radiation, it can also be repeated safely as many times as needed.
Q: What does the toolkit actually contain?
A: The toolkit has been shaped by conversations with people with CF, their carers, and their clinical teams – so the final content reflect what those groups actually said they needed. It includes plain-language explanations of what lung MRI shows, guides to help clinicians explain results clearly, and resources to help people with CF understand what their scan means for their care. The toolkit is available online and free to access — explore it here.
Q: What is the MAGNIFY Project
A: MAGNIFY (Magnetic Resonance Imaging in Cystic Fibrosis) is a Strategic Research Centre funded by the Cystic Fibrosis Trust and the Cystic Fibrosis Foundation. It comprises four separate PhD projects across the Universities of Sheffield, Nottingham, and Manchester, each approaching lung MRI from a different angle – from developing the scanning technology itself, to understanding how results are communicated to patients and clinicians
Timeline
The long journey
Study begins
Approval granted
First SURVEY begins
FOCUS GROUPS BEGIn
Toolkit co-development BEGIns
CF TOOLKIT RELEASED
TOOLKIT interviews begin
SECOND SURVEY begins
Study Ends
IMPACT
What’s happened
One of the first outputs from this research is now live: an interactive toolkit to support the communication of lung MRI results to people with cystic fibrosis. Built with and for the CF community — patients, carers, and clinicians — it translates the findings from Phases 1 and 2 of the study into practical, plain-language resources.
Lung MRI Communication Toolkit
An interactive online resource to help people with CF, carers, and clinical teams understand and discuss lung MRI results. Built from real conversations — plain language, clear visuals, practical guidance.
Take a look — then tell us what you think. Your feedback helps shape how this toolkit develops. Use the comment section below to share your thoughts.
team
Who are we?
Lead Investigators
United Kingdom
University of Nottingham
Nottingham, UK
University of Sheffield
Sheffield, UK
University of Manchester
Manchester, UK
Cystic Fibrosis Trust
Cystic Fibrosis Foundation
University of Nottingham
This study couldn’t be done without all the participants, investigators, public involvement representatives and staff involved. Thanks to all of you for your support.
CONTACT
Get Involved
There are several ways to follow or contribute to this work.
Sign up to receive updates from this project as new research is published.
Follow this research
Get an email whenever we publish new findings on this project.
This study is part of the MAGNIFY project Find out more about by visiting the MAGNIFY website.
MAGNIFY website
Dan Beever’s Living & Breathing It podcast explores the experience of researching conditions from the inside. New episodes ongoing — available on Spotify and Apple Podcasts.
Listen now
Authors
Have your say
We’d love to hear from you — whether you’ve explored the toolkit, have questions about the research, or simply want to join the conversation.
Have you used our toolkit? What did you think — was it useful, and is there anything you’d like to see added or changed?