Diversity in CF clinical trials

Supporting CF clinical trials across the UK

The Clinical Trials Accelerator Platform (CTAP), also known as the Trials Accelerator, is an initiative funded by the US Cystic Fibrosis Foundation which helps people with CF across the UK take part in clinical trials. The Trials Accelerator has a national network of 27 CF centres, along with dedicated specialist CF trial coordinators at each site.

Now in its fifth year, a key aim of the Trials Accelerator is to help everyone with CF take part in research and access potentially transformative treatments as early as possible. This includes taking steps to ensure any inequalities of access to clinical trials are reduced. 

Introducing our Diversity in Clinical Trials project

Feedback from our network of CF centres has revealed that certain groups of people living with CF are under-represented in clinical trials. This includes people from ethnic minority backgrounds. The Trials Accelerator has launched a new project, with the aim of encouraging increased diversity in clinical trial participation and addressing any barriers to accessing trials that people within the CF community may face.

We want everyone with CF to be physically well, and this means that everyone with CF, whatever their background, should have opportunities to access new and potentially life-changing treatments as early as possible.

Our understanding of the safety and effectiveness of new treatments for CF is critically informed by people with CF who take part in clinical trials. It is vital that we have a diverse representation of participants when investigating new medications and treatments, so that conclusions are reflective of the CF community as a whole.

Breaking down barriers

A common misconception of CF is that it is a condition that only affects the white population, but this is not true. According to the 2021 UK Cystic Fibrosis Registry Annual Data Report, almost 6% of people with CF in the UK are from an ethnic minority background. The needs and lived experiences will vary across different ethnic communities, and this means the ways in which we currently reach out to people with CF about clinical trials may not be suitably tailored for everyone.

It’s important we consider additional factors such as spoken languages, religion and cultural beliefs, and that we ensure people from diverse ethnic and cultural backgrounds feel understood, represented, and included in all conversations about research and clinical trials.

A recent publication from the Birmingham CF clinical team and colleagues within the Trust, highlighted that people from minority ethnic backgrounds are less likely to benefit from highly effective CFTR modulator therapies like Kaftrio, due to the prevalence of different CF-causing mutations in this community. New treatments such as genetic therapies are being developed which would be suitable for people who have rarer CF mutations. However, while eligibility may not be the only reason for a lack of diversity in clinical trial participation, it is important to be mindful of people being unintentionally disadvantaged when it comes to accessing treatments due to factors such as ethnicity or socio-economic background.

Making sure nobody with CF is left behind

The first part of the Diversity in Clinical Trials project will involve gathering data and insights to add to the initial feedback and evidence of under-represented groups in CF clinical trials. These insights will play a crucial role in shaping the development of strategies to increase awareness, understanding and engagement in clinical trials of people within under-represented groups.

This project will involve reviewing the Clinical Trials Accelerator Platform and our approach via NHS CF Centres to consider content and language to increase accessibility and enable more meaningful conversations with those who are currently under-represented in research.

How can I get involved?

If you have any personal experience you would like to share in relation to the Diversity in Clinical Trials project, or as a person in the CF community who is from a Black, Asian or ethnic minority background, we would love to hear from you. Please get in touch with us at [email protected]. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

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