Empowering everyone with CF to take part in clinical trials

To find out more, Tonia, who has CF, spoke to Dr Maya Desai, CF paediatrician at Birmingham Children’s Hospital and co-leader of a project to increase access to CF research and clinical trials.

Tonia: Tell us more about your project to increase diversity in research

Maya: In the past, everyone with CF got the same treatment. Now there are medicines like Kaftrio. However, there are a group of people who can’t benefit from them, so we need to be working even harder to find solutions and better treatments.

From the people we see in the clinic in Birmingham, it’s clear that there’s a difference in ethnic diversity between people who are eligible for modulators and those that are not.

It made me think are we involving people from these backgrounds enough in clinical trials and research? It’s really important we do because we want to ensure that they can benefit from the treatments being tested if they become medicines.

Tonia: What’s the first step?

Maya: It’s important to spread the word that opportunities to get involved in and take part in research and clinical trials are open to everyone. We want to make people feel as welcome as possible when they do.

Parents I’ve spoken to on a one-to-one basis say, “We’d love to get involved”, but they haven’t asked about clinical trials. I think we all need to be brave and speak to each other about research and trials.

Tonia: Is there evidence to suggest that people from minority ethnic backgrounds have a more severe CF diagnosis?

Maya: It’s a great question, and it’s a complicated answer! It is true that there are some factors that affect some groups disproportionately. There are so many things that determine the course of your CF, including your genetics, your symptoms and your socioeconomic background. Because there is a disadvantage in some ways, we need to do even more to give equity of access.

If you would like to take part in the project to increase access to clinical trials, please get in touch with our Clinical Trials team to find out more [email protected] .

We would love to hear from you about your thoughts on taking part in clinical trials, any limitations or concerns you have, and factors that should be considered to best support you with this. You can share your views in our survey.

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Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,900 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.