This article is more than 2 years old
What’s next for CF clinical trials? Updates from our trial coordinators workshop
The range of trial opportunities is growing
We set up CTAP to transform CF clinical trials in the UK. One of the ways we’re achieving this is by bringing together a network of CF centres and funded CTAP trial coordinators who can deliver a wide range of trials in the UK. The workshop was an opportunity for CTAP centre teams to get together and reflect on how UK trials are growing, both in the number and variety.
There are 23 trial opportunities currently on the Trials Tracker, looking at everything from yoga and CF to using AI to predict lung exacerbations. We’re also seeing more observational studies in the last few years. These studies look at certain aspects of CF or a treatment by collecting data outside of a clinical trial. For example, the CF BioResource project will look at how different genetic factors influence people’s CF over time.
More early phase trials are in the pipeline
We’re expecting to see lots more early phase trials in the next couple of years. Early phase trials focus on whether a new treatment is safe. During the workshop, trial coordinators and CF doctors shared their experiences of running early phase trials. These trials are more complex and demanding to run, with staff often being required to be on call 24/7 throughout the treatment period. However, there is a huge excitement that comes with being a part of them and working on something completely new.
For people taking part, they are also more intensive than other trials, often requiring extra visits and monitoring. It’s important for us to understand how different aspects of these trials might affect people or prevent people from taking part. We also heard someone with CF share their experiences of being part of an early phase trial. It was useful to hear that the process was no more intensive than they expected and they would take part again, as long as it was the right trial for them.
New trials will look at mRNA therapy
Some of these upcoming early phase trials will be looking at genetic therapies. We already have one genetic therapy trial open in the UK and we’re expecting to see more recruiting in the UK over the next year. These will mostly be looking at mRNA therapy but we may also see trials in other types of genetic therapy.
The current challenge with genetic therapies is how we deliver the therapy to the cells in the lung effectively. We heard from researchers working on different mRNA therapy trials. They talked about their different approaches to delivering this therapy, such as using lipid nanoparticles or a combination of virus vectors. Find out more about genetic therapies and look out for information about upcoming trials through our Trials Tracker, Clinical Trials newsletter and social media channels.
We’re making research referrals easier
One of CTAP’s aims is to make sure as many people as possible can access trials they’re eligible for. One of the ways we’re doing this is by creating new regional trial networks. In addition to the established London CTAP regional network, we are setting up additional CTAP regional networks across Scotland, South-West England, and North-West England.
These networks will bring together people working in CF centres across their region to make it easier to refer people to trials between centres. This will reduce barriers for people to take part in trials. It will also have many other benefits, for example by encouraging more collaborative working between CF centres and making the UK a more attractive place to set up trials.
Your experiences are shaping future trials
A big part of our work through CTAP is representing people with CF whenever we’re talking with people who fund, design and run clinical trials. On the day, our Involvement Team shared how we’re continuing to make sure your experiences and views are considered at every stage of the trial process.
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, they 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. One of the key ways we stay informed about your views and experiences is through our Involvement Group, which is made up of more than 300 people with CF and parents. Find out more about joining our Involvement Group.
To help us continue to fund crucial research into cystic fibrosis and its complications, donate today to help everyone with CF live a life unlimited.