BioResource relaunches partnership with Cystic Fibrosis Trust

Advancing research and support for people living with cystic fibrosis.

There are over 11,300 people with cystic fibrosis (CF) - a lifelong and life-limiting condition in the UK. People with CF are born with two copies of a faulty CFTR gene, one from both of their parents. Approximately 1 in 25 people carry the gene, often without knowing it.

The CF BioResource project is part of the NIHR BioResource and aims to create a cohort of people with CF based on their genetic information to improve our understanding.

The CF BioResource was originally launched in 2021 but unfortunately needed to pause recruitment in October 2024 due to funding constraints. Since then, Cystic Fibrosis Trust has worked closely with the BioResource to help fund and support its reopening, an important step that has the potential to transform our understanding of cystic fibrosis and its treatments.

“It has been our pleasure to work with the Cystic Fibrosis Trust in the past and we are incredibly grateful for their continued support, which allows us to work together again to invite adults and children with cystic fibrosis to join the NIHR BioResource. This marks an important step forward as we continue working towards a future where health outcomes are improved and treatments are more effective for everyone living with and affected by this condition”
- Vicky Hills, Research Recruitment Manager, NIHR BioResource

We are thrilled to announce that the CF BioResource has reopened to recruitment. More people with CF can now join the project, which will be an invaluable resource for future CF research.
- Rebecca Brendell, Head of Clinical Trials Accelerator Platform (CTAP) & Business Development at Cystic Fibrosis Trust

How can people join?

Adults and children with a diagnosis of CF can join the CF BioResource either in person or online.

Adults can join at a participating hospital, CF centre, or NIHR BioResource Centre. Speak to your CF team to find out how to join in person.
If you have already joined the BioResource you do not need to join again.

Children and young people (aged 0 to 15) have 2 options:

You can join online via the DNA, Children and Young People’s Health Resource (D-CYPHR).
Speak to your CF team to find out how to join in person at a participating hospital, CF Centre, or NIHR BioResource Centre.

Any child can join D-CYPHR, whether they have CF or not. For example siblings and other young family members of people with CF who are not affected can play a vital role in helping to improve health outcomes for everyone.

We hope that by having this joint recruitment approach of online and in person, it will help increase research accessibility.

What does the process of joining look like?

Whether you’re an adult or child joining, the process is straightforward and very similar. To get started, you’ll be asked to complete a consent form, along with a health and lifestyle questionnaire.

For adults, a blood sample will be taken during a routine appointment.
For children, the process is flexible. If you register online via D-CYPHR, you’ll receive a saliva collection kit by post, allowing you to provide a saliva sample at home. If you choose to join in person, you can provide either a blood or saliva sample during your visit.

You can find more information about which hospitals and centres are currently participating via the Trust’s Trial Tracker.

Watch the video below to find out more about how the BioResource works.