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PPI putting your voice at the heart of progress

One of the major elements driving the Cystic Fibrosis Trust’s Clinical Trials Accelerator Platform is Patient & Public Involvement – or PPI for short. This means putting the community at the heart of our commitment to supporting access to clinical trials. For CF Week, PPI Coordinator Lorna Allen brings you an update on how the community is helping develop this major body of work.

Along with the appointment of our first phase of CF Trials Accelerator centres across the UK, the Clinical Trials Accelerator Platform has been ensuring the voices of our whole CF community are included in all aspects of clinical trials. 

Half of the Trials Accelerator team comprises people affected by CF (either living with CF themselves or as a parent of someone with the condition). With additional feedback from others living with CF, we have been developing some new information guides, which will include fascinating and inspiring stories from those who have previously participated in trials, and will provide an understanding of the complexities of the trials process. 

In the spring, we conducted a survey to help us create our own database of CF trials, which would be a valuable resource for people affected by CF seeking trials they or their loved ones may be suitable for. Our Trials Tracker is now being built, taking this feedback into account, and after further user testing over the summer, will be ready for use from our website in the autumn, providing a comprehensive list of all current trials and a filter search function.

Take a look at our video, which highlights the value of research by showcasing some treatments now commonly in use for CF care, made available by people taking part in trials over the last 30 years.

Time to get involved

Patient & Public Involvement is a vital part of the Trials Accelerator and to support this we are forming three PPI Groups.

Focus Group

Our Focus Group is expanding, seeking representation from the whole CF Community, from the youngest to the oldest, ready to give their views and opinions answering surveys and questionnaires, or by joining digital forums presented by research teams. If you are interested in research and want to get involved, email clinicaltrials@cysticfibrosis.org.uk to register your details.

Peer Advocates

We are also pleased to welcome our Peer Advocates– people with CF (or parents) who, through experience of trial participation themselves, are keen to promote the value of research and to share those experiences with others considering participation for the first time. As the second wave of CF centres are appointed to the Trials Accelerator we will be seeking more Peer Advocates, so if you would like to find out more about this role, please contact us at clinicaltrials@cysticfibrosis.org.uk.

Lay Reviewers

We have also filled our Lay Reviewers group and this team is preparing to liaise with researchers by starting training this month. These people, who are also either living with CF or are family members of someone with the condition, will help to ensure that future trials meet the needs and requirements of people with CF and can be accommodated around an existing heavy treatment regime. They will have the opportunity to shape and influence the design of trials by reviewing the plans and procedures in advance, as well as reviewing the results published upon completion of a trial.