What to expect at the end of a trial

Researchers will make the results available to participants once the data is final and all of the results have been analysed. The researchers have a duty to publish the results publicly so that other people can use them to make decisions about CF treatment and care. 

Clinical trials can go on for years so it can be a long time until the researchers know the results. For some trials, you might hear back within a few months after finishing the trial, but for others it could be over a year.  

When you join a trial, your research team should let you know a rough timescale of when the results will be published. After you have finished your part in the trial, your research team should keep you informed about what stage the trial is at and when you are likely to hear about the results. 

How long it takes researchers to complete a clinical trial and publish the results depends on things like the type of trial, how many people are being recruited and how long you take the trial treatment for. For example, a phase 1 study like the new genetic therapy trials might be quick to publish results because it involves a small number of people and is looking primarily at safety. The researchers will hope to publish results quickly and move on to phase 2. 

With some studies, we wouldn’t expect to publish results for many years. This may be because they are recruiting more people over a longer period of time or they aim to monitor people’s behaviours and outcomes over a longer period of time. 

It is common for there to be different parts (or ‘arms’) to a trial. So even if your participation has ended, the trial may still be going on with different participants in a different group. The researchers aren’t able to analyse and share the results until everyone has finished.   

Some clinical trials may have what’s called an ‘open-label extension study’ after the trial ends. In these cases, you may be invited to enrol in the extension study and would be given the study medication for a longer period. The objective of the study is primarily to gather information about safety and tolerability of the new drug in long-term, day-to-day use. The study will normally be longer than the initial trial and often continues until the drug is licensed.

Talk to your clinical and research teams to discuss what options might be available for continuing treatment after the trial.

Clinical trials matter to everyone. All of the developments in CF treatment over the last few decades are thanks to people supporting clinical trials. 

It's so empowering to know that you are making a difference in CF research. If people didn't take part in trials, we wouldn't have Kaftrio.

Read Jane talk about participating in over 20 trials 

Through the Clinical Trials Accelerator Platform CTAP, the number of people taking part in CF clinical trials is increasing. Together we’re making a big difference to speed up the development of new treatments and care for people with CF. Find out more about CTAP and the latest achievements in CF clinical trials. 

If you have taken part in a clinical trial, whether it was recently or not, we’d love to hear from you. Our Involvement Group contributes to the future of CF research by sharing their experiences of taking part in trials. 

This is essential in helping the people who run clinical trials know how to design trials around the needs and preferences of people with CF. It also helps people with CF know what to expect if they’re considering taking part in trial. 

As a member of our Involvement Group, you could be asked to complete surveys or questionnaires, review information or take part in focus groups. We may also contact you with opportunities to share your story with other people with CF, for example to be included in our resources or regular communications.  

I have participated in a number of research focus groups and have seen that this can impact people living with CF in a positive way. My main focus is, and always has been, to help the younger generation in some way. I know the questions I have about my personal CF can only be answered through research and clinical trials. Those trials can only give the answers if we all pull together.

- Tonia, Involvement Group member

Share your experiences

1. Sign up to our Clinical Trials and Involvement Newsletter for regular updates on clinical trials and involvement opportunities 
2. Follow our research news and blogs and regular updates on our social media channels
3. Find trials that are currently recruiting on our Trials Tracker