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A day at a CF clinical trials centre
The day begins at the children’s CF clinic, where Kate Alderton, the trial coordinator from the Clinical Trials team, is talking with the CF care team. The teams work closely together so that everyone is up to date with any news on trials and people attending the CF clinic.
There are a few families in the clinic today for their regular check-up visits. During their appointments, they are reminded of any clinical trials they can take part in.
Today the team is particularly talking with families about the ongoing recruitment for the CF Bioresource study. If families want to be involved in this, the team will enrol them at a time they are taking other blood samples so it doesn’t need an extra needle.
Setting up new trials
Later in the morning, the Clinical Trials team is talking about a new trial opening later in the week. This is the result of a long process between them and the sponsor (the company funding the trial) to make sure the Bristol centre is well suited and prepared to run this particular trial.
This process is supported by the Trust’s Clinical Trials Accelerator Platform (CTAP), a UK network that brings together CF centres to support and deliver clinical trials.
When a sponsor is thinking of running a new trial, the CTAP central coordinating team will send out details to centres like Bristol, who will consider whether they are a good match. For example, does Bristol have the right patient population? Does the team have the right experience and resources to run the trial safely? They then go through several rounds of planning and providing evidence before being approved to open the trial.
Follow-up calls and appointments
Over in the adult research centre, trial coordinator and research nurse Sally Coplowe has been on the phone with current trial participants as part of their ongoing monitoring and observation. For many trials, people will come in for regular in-person visits initially, before moving to monthly follow-up phone calls.
A challenging part of running clinical trials is making sure that participants follow the trial instructions exactly and understand what information they should report.
For example, people may not consider Lemsip as medication or might not think a mild cold counts as an illness.
Data collection needs to be exact, but the real world is messy. It’s about wording things in the right way so we get the right information.
Sally Coplowe, CTAP Trial Coordinator and Research Nurse
Keeping people interested in research
Recruitment is a challenging part of clinical trials because there is always a level of uncertainty. However, there seems to be a lot of general interest in research from the CF community at the moment, and there are a lot of different ways people can be involved.
The Bristol centre has found that people are very interested in the Bioresource study, because it’s an easy way to be a part of research.
Kate says Kaftrio has paved the way for a lot of research that’s going on now because people can really see the impact that research can have.
People say they want to give back because of what others have done for them
Kate Alderton, CTAP Trial Coordinator
Sally agrees Kaftrio has changed things. It’s a clear example of successful CF research that Bristol was a part of. They can say that they ran this trial that changed the landscape of CF. “The centre and I feel very proud to have been a part of it. We want patients to feel proud and excited that their centre was a part of it too.”
Find out more about cystic fibrosis clinical trials and the Clinical Trials Accelerator Platform. You can also find a list of current trials on the Trials Tracker.
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