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Five ways the CF BioResource project could help people with CF
1. Creating a register of people’s genetic information
The CF BioResource project is a part of the NIHR BioResource. The NIHR BioResource was set up to support health research and improve our understanding of both common and rare diseases. Thousands of people, both with and without health conditions, have already shared their genetic information with the NIHR BioResource. We’re excited that more than 1,000 people have now joined the CF BioResource project, which is aiming to create a register of people with CF based on their genetic information
With Cystic Fibrosis Trust’s support and the hard work of our recruiting clinicians across the UK, we are building a powerful recallable resource of people, samples and data, to enable further research into CF. We are very proud to be supporting research in this area and look forward to building on this success in the future.
Dr Nathalie Kingston, Director of the NIHR BioResource
2. Finding out why everyone’s CF is different
We know variants in the CFTR gene causes CF. However, this only plays a small role in how CF affects us differently. People with the same CFTR gene variant often experience very different symptoms and respond to treatments differently. A big question in CF now is how variants in lots of other unknown genes influence CF. For example, differences in these other unknown genes can have a big effect on things like how your lungs work, whether you’ll respond to CFTR modulators and whether you’ll get infections.
3. Developing personalised treatments
Researchers will be able to apply to combine genetic information from the CF BioResource with data from the UK CF Registry within their research studies. This could be used to make predictions about which gene variants are associated with which symptoms and who will respond best to which treatments. This will help us develop more personalised treatments for everyone with CF, including people with rare CF variants.
4. Matching people with the right research opportunities
To get a better understanding of how different genes (both CF and non-CF genes) affect CF, researchers need to be able to identify people with certain genetic variants. However, this information is not currently easily available. The CF BioResource project aims to change this. When you join the CF BioResource project, you agree to be contacted by researchers in the future who are looking for people with your specific genetic or phenotypic (physical) characteristics. This will make it easier for researchers to find the right people for these studies. You may be invited to take part in CF research or studies looking into a wide range of other conditions.
5. Encouraging more trials to open in the UK
Having this information more readily available will make it easier to set up and recruit for clinical trials in the UK. Through our Clinical Trials Accelerator Platform (CTAP), we already work with people who run trials (sponsors) to grow the number and range of trials in the UK. The CF BioResource will make the UK an even more attractive place for organisations to set up and run trials.
How to join:
To take part, you’ll simply be asked to provide a small blood sample, which can be taken at the same time as taking other blood samples. Both children and adults can take part. Head to the Trials Tracker listing to see which CF centres are currently recruiting or talk to your CF team. If the project isn’t open at your usual CF centre, you may be able to be referred to take part at a different centre.
To find out more, see our previous explainer and video discussions about the CF BioResource project.
To help us continue to fund crucial research into cystic fibrosis and its complications, donate today to help everyone with CF live a life unlimited.