CF BioResource Project

Full title

National Institute for Health Research (NIHR) BioResource – Rare Diseases (CF BioResource Project) & DNA Children & Young People Resource (DCYPHR): Creating a national resource of people with CF willing to be contacted about future research opportunities

Study details

After a temporary pause to recruitment Cystic Fibrosis Trust has been working closely with the NIHR to support the re-opening of the CF BioResource study in May 2026 as part of both the rare disease and D-CYPHR (DNA, Children + Young People Health Resource) project. 

This project will collect samples from participants, including those with cystic fibrosis (CF), so that genetic data from these samples can be joined up with clinical data from registries such as the UK CF Registry. With the goal of enabling researchers to investigate the causes of rare diseases, which can then help improve rate and timing of diagnosis and drive the development of more targeted therapies. 

 

What the study involves: 

After signing a consent form, participants will be asked to provide a small blood sample (adults) or saliva (children), and share their contact details with the research team. This information will be stored until the end of the study (currently planned for March 2029), and will be used to invite participants to future research studies investigating the causes of diseases and potential treatments, including research for CF. 

A sample of DNA will be extracted from the blood or saliva sample and can be studied alongside clinical information about the participants condition in order to understand more about the genetic causes of rare diseases. 

Participants who wish to withdraw can do so at any time and request their sample to be destroyed. 

 

Adults with CF: 

If you are an adult with CF, you can register to join the CF BioResource project by speaking with your CF team. 

 

Children or young person with CF (Age 0-15):

There are two options for joining for children and young people:

You can regiester to join the CF BioResource project by speaking with your CF team 

or 

You can sign up or be enrolled by a parent/gaurdian to the D-CYPHR (DNA, Children + Young People Health Resource) arm of the study online, by joining on the D-CYPHR webpage.

 

The NIHR BioResource - is a partnership of volunteers, researchers, clinicians and others in hospitals, charities, patient groups, universities and companies, working together to search for the causes of disease and for new treatments. 

To learn more:

• See our information and videos about the CF BioResource Project
• Find out more about the NIHR BioResource
• Find out more about D-CYPHR

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