Help us develop a universal Core Outcome Set for Cystic Fibrosis (COS-CF)
The problem
There is currently not a consistent list of measures used in all cystic fibrosis research to make studies and trials comparable.
When researchers test new treatments, they use ‘outcome measures’ to measure success. Different researchers use different outcome measures - even for very similar things - and this makes it hard to compare results and find out which treatments work best.
For example, if different trials test antibiotics for lung infections, they might measure success in different ways, such as:
Eradication of infection immediately after treatment
Eradication of infection a year later
How long a person stays infection-free after treatment ends
These are all useful, but if every study measures success differently, it’s hard to truly know what works best.
The solution
We’re creating a universal Core Outcome Set for Cystic Fibrosis (COS-CF) that all CF trials can use—so results can be compared accurately and consistently.
COS-CF will include a small number of outcomes that every trial in CF will use, no matter what the research question is.
A universal core outcome set ensures:
Research that reflects real life – measuring what truly matters to people with CF, healthcare professionals, and researchers.
Stronger, more reliable trials – making it easier to see which treatments work best.
Better treatments, faster – because when research is aligned, progress happens quicker.
🎥 Watch this explainer video to learn more about what core outcome sets are:
Developing COS-CF
To make sure this core outcome set reflects what really matters, we will:
Run surveys to gather input from the CF community
Hold workshops to agree on the most important outcomes
You can take part in our surveys and workshops to help shape COS-CF.
Who can get involved?
We want to make sure COS-CF includes the outcomes that matter most. That’s why we need input from:
👤 People with CF (16+) and families of children with CF
🏥 Healthcare professionals working in CF
🔬 Researchers, pharmaceutical companies, and trialists working in CF
Surveys
We’re running a series of three short surveys to decide which outcomes should be included in COS-CF.
How it works:
✔ You’ll rate different outcomes based on how important you think they are.
✔ You’ll see anonymous feedback from others in the community.
✔ In each new survey round, you can update your answers based on this feedback.
✔ After three rounds, we’ll have a clear list of the most important outcomes.
Surveys take place on three separate days, each expected to take 20-30 minutes to complete.
This process is called an eDelphi survey.
📅 Survey opens summer 2025.
How to get involved in the surveys
Anytime from March 2025
Register your interest now by emailing us at cos-cf@qub.ac.uk.
Read the Patient Information Sheet (PIS)
You can read more about the surveys by reading the COMET Initiatives plain language summary.
When the survey opens in summer 2025
Read the Participant Information Sheet (PIS) – we’ll email you a link when the survey is live.
Access the survey online – we’ll send you a link via email and post it on this web page.
Give your consent – before starting the survey, you’ll be asked to confirm your participation.
Once the survey is live, you’ll also be able to access it through a link on this web page—no need to email!
Online workshops
After the surveys, we’ll host interactive online workshops to discuss the most important outcomes from the surveys.
What to expect:
✔ Workshops last 2-3 hours
✔ You’ll receive reading materials in advance to help you prepare
✔ The group will work together to agree on the final core outcomes
📅 Workshops will take place in winter 2025.
How to join a workshop
When filling out the eDelphi survey, you’ll be able to register your interest in the workshops—this is completely optional. We will then contact you to arrange participation.
You can also email the research team to register your interest.
Your participation is invaluable in shaping the future of CF research.
We understand that life can be busy, but by taking some time to complete our surveys and, if you would like to, also participate in the workshops, you’ll play a crucial role in ensuring research focuses on what truly matters.
Your involvement is completely voluntary, and you are free to withdraw from the study at any time.
Every contribution, big or small, makes a difference!
What happens next?
After completion of the survey and workshops, this is what we plan to do.
Sharing the results
✔ We’ll post the findings here on our website.
✔ We’ll hold an online event to share our findings with the CF community.
✔ Our findings will be submitted to peer reviewed journals for publication and a final study report will be sent to the CF Trust.
Adoption of the COS-CF
Once the COS-CF is finalised, we aim for it to be widely adopted in CF research. This means encouraging researchers, and trialists to use these agreed-upon outcomes when designing clinical studies.
Future work
Next, we plan to expand our COS-CF to include details about how to best measure our chosen outcomes. Standardisation will make it even easier to compare and combine research findings, leading to faster progress in CF treatment.
Meet the COS-CF Team
Bethinn Evans
PHD Student
Dr Rebecca Calthorpe
Medical Research Fellow
Prof Alan Smyth
Professor of Child Health
Prof Carmel Hughes
Academic Pharmacist
Dr Sarah Gorst
Researcher
Prof Damian Downey
Professor and Respiratory Physician
Jenny R
CF parent
Dr Gwyneth Davies
Clinical Associate Professor
An explanation from Prof Alan Smyth
In this 4-minute video, Alan covers:
An introduction to his work
What problem we are trying to solve
The impact on clinical practice
The solution
What is COS-CF
How you can help
Got a question?
Find answers here in our FAQ, or contact us at cos-cf@qub.ac.uk
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No, participation in this study is voluntary and unpaid.
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No, participation is entirely voluntary. You can choose whether or not to take part.
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No, the study is conducted entirely online.
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To make it easy for you, use this template:
Subject line: COS-CF participation
Message:
Hi Bethinn and the COS-CF research team
I’m interested in taking part in the COS-CF study.
I’m a person with CF / family member of someone with CF / health professional / researcher / pharmaceutical company / other [delete as appropriate]
Please let me know when the surveys are open to take part / can you give me more information about this / something else (put your own question for the research team here) [delete as appropriate]
Thank you!
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There will be three rounds of surveys on three separate days. Each survey is expected to take 20-30 minutes to complete.
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We strongly encourage you to participate in all rounds of the eDelphi, as your input is crucial in shaping the research. We will send reminders when each new round opens. However, you are free to withdraw from the study at any time without providing a reason. If you do withdraw, your responses up to that point will still be used, as they are valuable to the study.
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If you’d like to participate in the workshop after completing the eDelphi survey, please check the relevant box during the eDelphi consent process. We will contact you with more details when the workshop becomes available.
If you initially choose not to participate in the workshop but later change your mind, please email the study team, and we will provide you with further information on how to join.
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Because the workshop is related to the eDelphi surveys, at the moment we plan to recruit only those people who are involved in the eDelphi.
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A workshop will likely last up to 3 hours but will include a break. A workshop will also include pre-meeting material to read beforehand. This will be info about what to expect in the sessions, and the outcomes which were felt to be most important in the eDelphi surveys that we will mainly discuss in the sessions.
If consensus is not agreed through the workshops, participants may be invited to attend subsequent online workshops to achieve this.
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CF research is conducted worldwide, but countries have developed different protocols and guidelines around the best way to measure the effects of treatments in trials.
Thanks to advancements in communication technologies, collaboration has never been easier. Virtual meetings and online surveys allow researchers, clinicians, and people with CF to connect and share insights across borders, in real time.
By harnessing these tools, we now have the opportunity to work together on a global scale, ensuring that the outcomes measured in CF research reflect the needs and priorities of the entire community—no matter where they live.
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‘COS-CF’ stands for Core Outcome Set for Cystic Fibrosis
