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International Clinical Trials Day: 5 things to know about CF clinical trials
Cystic Fibrosis Trust supports a wide range of CF clinical trials in the UK. Our Clinical Trials Accelerator Platform (CTAP) has a network of 25 trial centres across the UK. It also involves people with CF shaping and developing clinical trials, supports trial sponsors (organisers) to run them in the UK and provides information to the CF community about the studies they can take part in. Since CTAP launched, we’ve supported more than 70 studies, with more than 4,000 people taking part so far.
In this article we highlight a few studies you can take part in, hear from Yasmine one of our CTAP trial coordinators about her role, and tell you how you can find out more about CF clinical trials.
We’re united by our differences
There are over 2,000 different types of CF gene variants. We know that currently people with certain rare gene variants are not able to benefit from CFTR modulators. We also know that everyone’s CF affects them differently, and people with similar treatment options can have very different symptoms and complications.
The CF BioResource project is creating a register of people with CF who have agreed to be contacted about research based on their genetic make-up. This will make it easier for researchers to find the right people to take part in their studies and develop personalised treatments for all gene variants.
More than 1,000 people have already joined the CF BioResource project. To find out more about taking part, talk to your CF care team or see the listing on our Trials Tracker here.
Taking part from home
Clinical trials don’t always involve extra visits to a CF clinic. You can find several studies on our Trials Tracker currently looking for participants that you can take part in from home. This includes:
- GRAMPUS-CF: Understanding gut symptoms in people with CF
- YOGA-CF: Investigating the effects of yoga for people with CF
Keep an eye out for future remote participation trials on our Trials Tracker. We’ve recently added a new filter that means you can now search specifically for trials that allow remote participation.
Growing up with CF
Though people with CF have more treatment options now, there is still a lot we need to understand about CF in babies and children. The ENHANCE study aims to better understand various aspects of the lives and health of children with CF from birth to adulthood.
This study will monitor how CF complications develop in small children and how CF develops in different groups of children. This will take place over a five-year period initially, with a hope of further long-term extension into the future.
Cystic Fibrosis Trust has supported this study by helping to partially fund the study, as well as helping to include the needs and preferences of people with CF in the study design through our involvement activities.
Where the lab meets the clinic
Early phase trials are the first time a treatment is tested in people, after it has been extensively tested in the lab. This type of trial tends to recruit small numbers of people and focus on whether a new treatment is safe.
We’re expecting to see more early phase trials opening in the UK as the landscape of CF research continues to change. This includes trials looking at genetic therapies.
Earlier this year, we spoke to one of our CTAP trial coordinators, Yasmine, who works in early phase genetic therapy trials. She told us more about her role, how these trials are different and what a typical day is like for her.
“Working in early phase trials, we are translating cutting-edge science into tangible benefits for people with CF,” Yasmine told us.
Keeping track of clinical trials
Our Trials Tracker brings together all CF clinical trials currently recruiting in the UK, so you can find trials you can take part in in your area and further afield.
If there are no trials near you, try widening your search area or contact us. You may have the option to travel to a different CF centre to take part in a trial. Some may be able to reimburse you for travel and accommodation costs if you have to travel a long way.
To be the first to know when we’ve added new clinical trials, sign up to our clinical trials and involvement newsletter or keep an eye out on our social media channels.
If you’re interested in finding out more about trials, you can also talk to your CF care team, contact a trial coordinator, or get in touch with CTAP.
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.