“I'm a really big believer in clinical research” – East of England patient is the first recruit in cystic fibrosis diabetes study

A patient from Cambridge has become the first person in the UK to sign up to a study aiming to improve glucose management and reduce the treatment burden for people living with cystic fibrosis-related diabetes (CFRD).

The CL4P-CF study, funded by the National Institute for Health and Care Research (NIHR), aims to find out if closed-loop systems can improve glucose control and quality of life compared to standard insulin treatment in young people and adults with CFRD.

A closed-loop system, also known as an artificial pancreas, is an insulin pump and a continuous glucose monitor that ‘talk to each other’ through a computer programme on a phone or inside the pump.

Elly, 35, has lived with cystic fibrosis (CF) her whole life and developed diabetes ten years ago.

CF is a genetic condition which causes people to produce thick, sticky mucus, which can build up in the lungs, pancreas, and other organs. This can lead to a range of symptoms, including breathing problems, lung infections and problems with digesting food.

CFRD is one of the most common complications of CF in adults. It has features of both type 1 and type 2 diabetes, but there are differences in how it develops and is treated.

While Elly’s lung function has improved through a new treatment in recent years, her diabetes had become harder to manage. She said:

“In terms of just trying to manage normal life, like working, managing sleep and fitness, I find that diabetes has a way of affecting all these different areas of your life and it's difficult to manage.”

The trial, which runs for six months, randomly allocates participants to two treatment interventions: those whose glucose levels will be controlled either by a hybrid closed-loop system called CamAPS FX, or by participants’ standard care of usual insulin therapy with continuous glucose monitoring.

Elly has always been open to taking part in research studies and was invited to participate in CL4P-CF by the research team at Cambridge University Hospitals NHS Foundation Trust (CUH), who also lead the study nationally.

She said her “mind was blown” about the science behind the trial:

“I know that access to new treatments doesn’t happen unless patients volunteer to be on a trial, to make sure that it's safe and to make sure that it's effective.

“I'm a really big believer in clinical research and participating in research in any way that I can, as a person living with a long-term condition.”

As well as taking part in the study, Elly is currently working with King’s College London to build an online community for people with long-term conditions to help manage their mood and well-being through peer support and psychoeducation resources.

Health research has transformed the landscape of CF, and effective new treatments emerging over the last few decades has led to life expectancy increasing significantly. Elly said:

“Growing up with CF, you spend quite a lot of time in hospital and your normal maybe doesn't look like everyone else’s normal.

“Through a lot of hard work and probably a lot of luck as well, the medical research has just come on so much in the last twenty years, which I couldn't even begin to imagine when I was at school.

“I have a real interest and admiration for the research happening and I get really inspired by being in that atmosphere, hearing about the latest science that's led to a trial or the latest medical technology. 

“Although research is not something which a participant is always going to benefit from themselves immediately, I think there's lots of positive things about taking part in research that you can experience.”

Dr Charlotte Boughton, Chief Investigator of the CL4P-CF study, said:

“The trial aims to find out if an automated insulin delivery system (also called a closed-loop system) can help people with CFRD to have improved glucose outcomes and reduce the treatment burden of managing diabetes.

“Reducing burden is a top priority for people living with CF so we are really grateful to those taking part in this important study which is trying to improve the management of CFRD.”

Professor Jeremy Turner, Consultant Endocrinologist and Clinical Director at the NIHR Clinical Research Network East of England, said:

“We are so grateful to everyone in the East of England who has signed up to be part of research. Without people like Elly taking part in research, life-changing discoveries through clinical trials would not be possible.”

If you would like to find out more about NIHR research and how you can take part, visit www.bepartofresearch.uk.