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Join the CF BioResource and help improve understanding of CF
What difference will the project make?
The CF BioResource is a hugely important project that could change our understanding of CF and CF treatments in many ways. It is part of the NIHR BioResource, a large health research organisation with more than 350,000 participants who have donated genetic and health and lifestyle information to help accelerate the diagnosis and treatment of ill health and disease.
Keeping a register of this information will help us learn why CF affects people differently, even if they have the same CFTR gene variant. This could help us develop more personalised treatments for CF. It will also make it easier to connect people with research opportunities based on their health, lifestyle and genetic information.
Five ways the BioResource could help people with CF
What’s changed?
The CF BioResource paused recruitment in October 2024. Cystic Fibrosis Trust has since worked with the BioResource to help fund and support the reopening of CF BioResource registrations.
Through the DNA, Children + Young People’s Health Resource (D-CYPHR), children and young people now have an additional route to join. D-CYPHR gives them the option to join either completely online or in person via participating hospitals and centres. We hope that being able to join either online or in person will give more children and young people the opportunity to take part in CF research. Any child can join D-CYPHR, whether they have CF or not. For example, siblings and other family members of people with CF can play a vital role in helping to improve health outcomes for everyone.
Currently adults will only be able to join in person. Visit the Trials Tracker for more information about which hospitals are currently participating. People who previously joined the NIHR BioResource do not need to rejoin.
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
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
How can people join?
- Adults can join in person at participating hospitals by speaking to their CF team.
- Children and young people (aged 0 to 15) have 2 options:
- visit the D-CYPHR website to join online
- speak to your CF team to join in person at participating hospitals.
After signing a consent form online or in person, you or your child will be asked to provide a small biological sample of blood or saliva and share your contact details with the research team. You may also be contacted about relevant future research studies based on your genetic information.
Visit the Trials Tracker to find out more
How will your data be shared?
We understand you may have questions about how your data and information is stored and protected. You can read more about this here. There is a careful, thorough review process completed before any researcher would be granted access to BioResource data. Participants have the right to withdraw at any time without reason and can do so easily here.
You might have seen the recent news about a data security incident involving UK Biobank. The NIHR BioResource is a separate and unrelated entity and its data was not involved in this. You can read NIHR Bioresources' full response to this recent incident on their website.
Find out more
- See the study listing
- See our additional information and videos about the project
- Find out more about the NIHR BioResource and the kind of research studies it has supported
- Find out more about D-CYPHR
Find out more about cystic fibrosis clinical trials. You can also find a list of current trials on the Trials Tracker.