A woman from Cambridge is the first person in the UK to sign up for a study aiming to make it easier for people with cystic fibrosis-related diabetes to manage their condition.
Elly, 35, was invited to take part in this new study by researchers at Addenbrooke’s Hospital, who are leading this important piece of work nationally.
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 cystic fibrosis-related diabetes (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.
The 35-year-old 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 or by participants’ standard care of usual insulin therapy with continuous glucose monitoring.
She said: “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.”
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.”
She added: “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.”
Dr Charlotte Boughton, specialty registrar endocrinology / diabetes at Addenbrooke’s and chief investigator for 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.”