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...
For many people with cystic fibrosis (CF), modulators have brought life-changing benefits. But these treatments don’t work for everyone. Some people have rare gene variants that current modulators can’t treat, while others can’t take them because of side effects. That’s why we are campaigning hard to improve the way new treatments are developed, tested and approved. Grace, who works in our Policy Team, shares more about the work she’s doing with the Medicines and Healthcare products Regulatory Agency (MHRA) to help ensure everyone with CF can access the treatments they need.
A Trust-funded Strategic Research Centre will investigate whether Magnetic Resonance Imaging (MRI) could be used to track changes in lung health over time. New MRI methods have been developed by the POLARIS group at University of Sheffield led by Professor Jim Wild, the Principal Investigator of this SRC.
For many women with CF who grew up before modulator therapies, pregnancy was a milestone they thought they might not be able to experience. Today, more people with cystic fibrosis are able to have and raise children. But with this change comes many unanswered questions. The Trust-funded MATRIARCH Strategic Research Centre (SRC), led by researchers at the Royal Brompton Hospital and Imperial College London, is tackling some of these questions around pregnancy, parenthood and infant health. We went inside the lab with investigators Dr Amy Downes and Dr Idan Bokobza to find out more.
Aminoglycosides are a group of antibiotic medicines such as tobramycin, amikacin and gentamycin. They are very effective at treating CF lung infections such as Pseudomonas aeruginosa and NTM. However, a side effect of long term use of aminoglycosides is that they can cause permanent hearing loss. In June we announced co-funding with RNID of a research grant to redesign aminoglycosides to prevent hearing loss. The research is being led by Dr Cheng and colleagues at the prestigious Stanford University in America. Here we explain their research in more detail.
