‘People on Kaftrio just want to get on with normal day-to-day life; it’s going to change the research we look at’: Research nurse Cendl Xanthe chats QuestionCF
How long have you worked in cystic fibrosis (CF)?
I'm a research nurse and I’ve been working in CF clinical trials in Cardiff coming up to four years now. The time has just flown by. I really enjoy it.
I was the Trials Co-ordinator, running the CF clinical trials here in the Adults CF Centre. Recently I’ve started working within the Centre as an Early Phase Trials Co-ordinator which means I help run studies where new medicines are researched in people with CF for the first time.
The current CF research priorities dictate my job quite a lot. For example, what kind of research we do here. Researchers keep them in mind when they're planning trials.
What effects have you seen from Kaftrio?
Kaftrio has changed everything for the majority of people with CF. Now, people who are on Kaftrio just want to get on with normal day-to-day life. I think it is amazing that they might be able to do that, but I think it's going to change what research we look at and what clinical trials we run.
But Kaftrio doesn’t benefit everybody. For those not on it, people talk about wanting more of a normal life and less treatment burdens - and I think that is a continuing theme.
Has this changed clinical trials?
The impact of improved health means that adults with CF are going back into work and maybe having families. They want to start prioritizing their life over taking part in research studies. However, we still need to do clinical trials to improve lives for all people living with CF, for example to develop new antibiotic treatments. CF lung infections are still there and people still have lung exacerbations.
What do you think future research studies would look like?
We’re the only adult CF centre in Wales. We reach out to massive geographical area. If someone lives in West Wales, that could be an hour and a half hour drive to get to us. A study visit for us will take all morning. So that has become an issue for us to encourage people to take part in studies.
During the COVID-19 pandemic we moved a lot of trials to remote study visits (where they can take place from a persons home) and that was really well received. I think trials in the future should be made to fit around people’s lives a bit more.
It is going to be tricky for people to have a balance between life and research. The refresh of the CF community’s research priorities has come at the right time, it's a really important piece of work and I think it's quite exciting.
We’re a partner in the QuestionCF project refreshing the CF research priorities. EVERYONE can take part by completing the survey open until 20 February. We’re particularly keen to hear about the CF research priorities of CF professionals - whether you’re a research nurse, CF psychologist, dietician or researcher – please take a few minutes to help shape the future of CF research.
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