RecruitingObservational

The More Life with CF co-design study

Many people with cystic fibrosis (CF) used to need a high-calorie diet. However, new and effective CF treatments have changed this, and some people with CF are now becoming overweight or obese. This study wants to help by creating a special weight management program just for them. Researchers will work closely with CF patients and healthcare professionals to design a program that supports healthy eating and being more active. This program will fit alongside an existing NHS digital weight management service, ensuring it meets the unique needs of people with CF and helps prevent future health problems like heart disease or diabetes.

At a glance

Status

Recruiting

Sponsor

University of Birmingham

Enrolment target

Start

15 Jan 2026

Estimated completion

01 Jul 2026

Adults with cystic fibrosis who are living with overweight or obesity

What is this study about?

Cystic fibrosis (CF) is a condition that people are born with, affecting their lungs and digestion. For a long time, people with CF were encouraged to eat a lot of calories to stay healthy and maintain their weight. This advice helped many live longer and better lives. More recently, new and very effective treatments for CF have changed things significantly. These treatments, like Kaftrio®, Kalydeco®, and Symkevi®, are so good that they've reduced the need for such a high-calorie diet for many.

Because of these wonderful improvements, some people with CF are now finding they are overweight or obese. This means their diet and activity needs have changed. To stay healthy and avoid other potential health problems like heart disease, diabetes, or cancer, they now need to eat fewer calories and be more active. This study aims to help bridge this gap by developing a specific weight management program tailored for adults with CF who are overweight or obese.

This isn't just a program designed by doctors; it's a team effort. The study will work hand-in-hand with people living with CF and healthcare professionals who care for them. Together, they will create a program that helps people adjust to their new dietary and activity needs caused by their improved health with the new treatments. The goal is to make a program that is easy to use, helpful, and fits well alongside an existing NHS digital weight management service.

Key takeaways

A new weight management program for CF patients is being developed.
It's for adults with CF who are overweight or obese due to new treatments.
Patients and healthcare professionals will help design the program.
The program aims to support healthy eating and active lifestyles.
It will work alongside an existing NHS digital weight management service.

Who may be eligible?

This study is looking for adults aged 18 and over who have cystic fibrosis and are currently overweight or obese. They need to be able to talk about their experiences and provide informed consent, which means understanding what the study involves and agreeing to take part willingly.

The study also welcomes healthcare professionals who work with adults in UK CF centres, such as specialist nurses, physiotherapists, dietitians, psychologists, or doctors. Additionally, professionals from adult weight management services are invited to join. For those taking part in design workshops, it's important to have access to video call platforms like Zoom or Microsoft Teams and a private place to participate.

Unfortunately, if you don't have cystic fibrosis and are overweight or obese, or if you are not a healthcare professional working in the specified fields, you would not be able to take part in this particular study.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you an adult (18 years or older)?
Do you have cystic fibrosis?
Are you currently overweight or obese?
Are you able to use video call platforms like Zoom or Microsoft Teams for workshops?
Can you provide informed consent to participate?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you'll be part of a team helping to design a new weight management program. Initially, some people (around 20-30 adults with CF who are overweight/obese and on the new CF treatments) will be asked to keep a record of what they eat and wear a small monitor to track their activity. After this, they'll have an interview to talk about what influences their eating and activity habits. CF healthcare professionals will also be interviewed about their experiences giving diet and activity advice.

Next, a group of people with CF, healthcare professionals, and weight loss experts will come together in workshops to design the actual program. They will use the information gathered from the interviews and other helpful strategies to create something practical and useful.

Finally, people with CF will be asked to try out parts of the program and give their thoughts. This feedback will be used to make changes and improve the program before it's ready to be tested in a future, larger study. The study is expected to run from December 2025 to July 2027.

Potential risks and benefits

A benefit of joining this study is that you'll be directly helping to create a new diet and exercise program that is specifically designed for people with cystic fibrosis to manage their weight. Your input will be very valuable in making sure the program is helpful and relevant. For example, some people might find it a bit uncomfortable to be video recorded during interviews or discussions, or to reflect on their diet, activity, or health. If this happens and you feel any emotional distress, support will be available to you. You are free to withdraw from the study at any time without giving a reason.

Locations (2)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University Hospitals Birmingham NHS Foundation Trust
City only
Birmingham, England
The University of Birmingham
City only
Birmingham, England

Common questions

What is the main goal of this study?

The main goal is to create a new weight management program specifically for adults with cystic fibrosis who are overweight or obese, designed together with patients and healthcare experts.

Why is a new weight management program needed for CF patients?

New CF treatments are so effective that some patients now need to eat fewer calories and be more active, as they are no longer struggling with weight gain in the same way as before.

Who is funding this study?

The study is funded by the National Institute for Health and Care Research (NIHR) in the UK.

What kind of commitment is involved in taking part?

Participation may involve recording your food intake, wearing an activity monitor, and taking part in interviews or workshops via video calls to help design the program.

Where is the study taking place?

The study is based at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust.

How to find out more

Joanne Barrett

joanne.barrett2@nhs.net +44 (0)121 424 1788 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.