UK CF Registry: "Our gold dust"

Hi Jamie. Can you tell us why you think the UK CF Registry so important? 

The purpose of the UK CF Registry is to improve the health of people with CF. Non-identifiable data from the Registry is used to help people understand their CF, and help doctors and researchers monitor the safety and benefits of new drugs (including CFTR modulators such as Kaftrio).

Data within the Registry helps to drive up standards of care, and it also helps us to work with commissioners to ensure there is enough funding. We can say to them, we know how many people with CF we’re looking after, we know what their health is like, and this is the service we need to provide. I use the headline data from the UK CF Registry annual report to help answer questions people ask me at their clinic appointments – and people can read the report for themselves if they want to too.

I use the headline data from the UK CF Registry annual report to help answer questions people ask me at their clinic appointments – and people can read the report for themselves if they want to too. 

What research are you doing with UK CF Registry data? 

A lot of women wanted to know about the experiences of people with CF at our clinic who had children. From our clinic data alone we couldn’t make any general comments about what they might expect – people’s lung functions were different and they had different CF complications. We did some research with colleagues in the US to analyse data from UK CF Registry and data from the US CF Registry to give a more detailed picture. As a result, we know a lot more about the experience of having a family if you have CF. The UK CF Registry also includes information on men with CF who have had children and we’ve included that in the analysis too.

This sounds like exciting research! How will it help those with CF planning a family? 

People with CF are helping us develop an online decision-making tool for those thinking about starting a family in the UK, adapting it from a US tool. We hope it will give people with CF the answers to their questions, if and when they’re ready to ask them. 

Conducting this research has also helped us update colleagues in other areas of medicine about how much life has changed for people with CF now. 

How is UK CF Registry data being used to support clinical trials? 

The UK CF Registry is becoming essential for clinical trials. It may be used in the future to help decide where to set up clinical trials for people with rarer CF gene variants. We can also use the UK CF Registry to be smarter about how we use and collect data from people with CF during clinical trials, for example as is happening in the CF STORM trial. 

The UK CF Registry is like gold dust, we’re so lucky to have it. It guides how we help people with CF to manage their condition now, and we can conduct research to answer their questions about the future.

Read more about the UK CF Registry