The Information & Support Advisory Groups are two groups of people from the CF community who provide feedback, thoughts and ideas to help us make sure that the information and support we develop and provide meets the needs of everyone with CF across the UK.
This study is looking to explore if exercise is an effective and safe method of airway clearance for people with CF. It is a feasibility trial and will help gain the insights required in order to plan a large full-scale trial. Researchers at Edinburgh and Portsmouth Universities have worked with the CF community to investigate which exercise (type, duration and intensity) should be performed for airway clearance, and are now hoping to recruit people with CF and their families to a study asking them to stop chest physiotherapy and replace with exercise for airway clearance instead. In addition, the researchers...
This study aims to look at the safety and effectiveness of taking a new triple combination CFTR modulator treatment, which is made up of the 3 medications VX-121, tezacaftor (TEZ) and deutivacaftor (D-IVA). Deutivacaftor is a slightly modified version of ivacaftor to make it potentially more stable in the body, which means deutivacaftor can be taken once per day instead of twice daily. The safety and effectiveness of this new triple combination treatment will be compared against Kaftrio® (which consists of the 3 CFTR modulators elexacaftor, tezacaftor and ivacaftor). CFTR modulators help the faulty CFTR protein to function properly. To...