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Understanding the power of UK CF Registry data to change CF care: experiences of being on the UK CF Registry’s Research Committee
What led you to join the Research Committee?
Marian When my daughter was young, I spoke to the CF nurse about the amount of time her CF treatments took. I began sharing my experiences of being a CF mum with lots of professional groups. At a CF conference where I was speaking, the Trust CEO was in the audience. She asked me to join the UK CF Registry’s committee. It was twenty years ago, and I haven’t looked back.
James: Before I joined the Committee, I took part in lots of CF clinical trials. It was a long drive from home to take part, and as time went on, I had fewer opportunities to do so. But I still wanted to be able to help in some way. I wanted to give something back and say thank you for all the support I’d received.
I like learning about CF and all the intricacies of it. I’m not the kind of person who would run a marathon or do a coffee morning to help, so the Research Committee seemed like a good fit.
What kind of things do you get involved in as a member of the Committee?
James: Researchers make requests for information stored within the Registry, also known as ‘data requests’. The Research Committee review these requests, and we are asked to read them and give our views. Sometimes the explanations of the research studies that people want to do, go completely over my head – but that doesn’t matter! There are experts on the committee who do understand them, so they can comment on that.
All we need to do as CF community representatives is assess whether or not their studies will benefit people with CF, their families or their relatives.
Marian: The research requests are interesting. It’s a lot of reading with some technical language, and sometimes you get stuck on some of the words and explanations the researchers use. If you don’t understand something, you can always ask questions – and you pick things up as you go along.
Although other committee members are doctors and might know more about the subject, we generally agree on whether someone should have access to the data.
What’s the time commitment involved?
James: Typically, there are between one and five requests each month. When we receive them, we have around ten days to share our views. The timings can be really flexible.
As well as reading the research requests when they arrive, there are Committee meetings around four times a year. They take place in person or online and last up to two hours. At the meetings, we discuss the results the researchers have found and general updates about the UK CF Registry.
What have you got out of being part of the research registry committee?
James: I’ve always been one to suck in knowledge and learn things. Being on the Research Committee has helped me understand why I need to do the things to keep me healthy. It’s a pleasure and a privilege to see how clinicians work together to understand more about CF.
Marian: It has been very satisfying to see data from the Registry being used to improve CF care over the years. I heard things I thought were never going to happen – such as a pill to help with the symptoms of CF – and they did! We have Kaftrio now, and what a difference it's making.
The joy of the Registry is that it's longitudinal, so every year, more data and more knowledge is being added about cystic fibrosis. When you’re asked to give consent for your data to be used in the UK CF Registry, there is a reason for it, and being part of the Registry Research Committee means you can see how and why it happens and understand the power of having this data to change CF care.
You can find out more about UK CF Registry on our website, from health trends from the latest Annual Data Report, to how CF researchers can apply for data.
Registry reports
Take a look at the annual registry reports, including the 'at a glance' summaries, giving a quick overview of how measurable aspects of cystic fibrosis have changed since the previous year.