Community involvement in trials

Community involvement in trials means people with CF sharing their experiences and preferences with the people who run trials (sponsors) to help inform how they prioritise, design and manage trials. It is not the same as taking part in a trial. 

You may hear this referred to as Patient & Public Involvement and Engagement (PPIE). This is a term used by sponsors to describe the process of involving people with lived experience of CF. If you are a trial sponsor, find out more about how we can help sponsors with PPIE.

You don’t need to have taken part in a clinical trial to be involved. By sharing your experiences of different aspects of living with CF, you can help make sure clinical trials are designed around the needs and preferences of people with CF.

At Cystic Fibrosis Trust, we have a large and active Involvement Group. Our Involvement Group is made up of more than 300 people who are affected by CF. They work with researchers to shape clinical trials, as well as being involved in other opportunities to make sure people with CF are at the heart of everything we do.

I'm a part of the Involvement Group here at Cystic Fibrosis Trust, and being able to input on specific trials and how things are done is invaluable to the community. It's so essential that CF patients are involved and have a voice.

- Jane, Involvement Group member

Cystic Fibrosis Trust organises a wide range of activities that help us understand your experiences and views so we can represent people with CF when talking with trial sponsors. Ensuring that clinical trials are designed around people with CF is one of the main priorities of our work through the Clinical Trials Accelerator Platform (CTAP).

It’s important that researchers know how to adapt their trials to meet your needs, particularly as we know that managing the symptoms and treatment of CF can already be demanding on people’s daily lives. Community involvement ensures that clinical trials meet the needs of people with CF, not just the interests of researchers or pharmaceutical companies.

We use your experiences to advise on everything from initial research proposals – which ultimately shapes which trials are approved – right through to the details of trial design. For example, your experiences might help us to review a trial’s eligibility criteria to reduce barriers to taking part or to ensure a trial is designed in a way that fits around people’s daily lives. These insights also inform how we communicate information about new trials to help people with CF make informed decisions.

Community involvement can speed up the trial process and help them run more smoothly, which in turn benefits everyone with CF by creating more trial opportunities and speeding up the development of new treatments. If you are a trial sponsor, find out more about how we help sponsors with PPIE.

As a member of our Involvement Group, you could be asked to take part in a range of activities to help shape future clinical trials. This could include:

• being part of a discussion about a study proposal
• reviewing the plan for a trial and feeding back on whether you think the appointment schedule is manageable
• thinking about how data collection might impact you or your child (eg whether taking part in additional lung function tests would be too much of a burden)
• reviewing a study questionnaire to make sure the questions are relevant and sensitive
• helping to design the invitation to be given to potential trial participants to make it more engaging and easy to read.

The Involvement Team will send out opportunities, via email, as they arise, you have the choice as to which activities you get involved with, there is no obligation. You can let us know your preference as to what topics are of most interest, as we have opportunities outside of clinical trials too which you may wish to get involved with as well!

If you have CF or are a parent, or carer or family member of someone with CF, no matter what stage of your CF journey, we’d love for you to join our Involvement Group. You don’t need to have taken part in a clinical trial to share your experiences and help inform future trials.

As the benefits of community involvement become more recognised, we are receiving an increasing number of requests from sponsors. We would like to share these opportunities with as many of you as possible.

Find out more about our Involvement Group and sign up to the Clinical trials newsletter to be kept up to date with the latest opportunities to take part in clincial trials and involvement activities. 

Sign up to our Involvement Group