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...
Tummy symptoms such as bloating, pain and nausea are common for people with cystic fibrosis (CF). These symptoms can be embarrassing and disruptive to everyday life. Despite this, most questionnaires used in CF research are not actually CF-specific. We need to change this. It is important that we have a CF-specific tool so that researchers can understand the daily impact of tummy symptoms for people with CF when it comes to studies, trials, treatments and ongoing care. This will help us address the CF tummy issues that matter most to YOU. Not just the things that clinicians and researchers think...
The purpose of this observational study is to collect information on the clinical characteristics (such as CFTR genotype and disease severity), treatment requirements (such as hospital visits and use of antibiotics), and quality of life of people with cystic fibrosis who are taking Kaftrio prescribed by their doctor as part of their routine care. This is an observational study. Participants do not have to complete any additional study procedures or attend study visits, but will be asked to give informed consent for their data to be used in the study. The data collected in this study is information that is...
The new medicine Kaftrio is now becoming available from the NHS to people living with cystic fibrosis (CF) with suitable genes. In clinical trials, Kaftrio has been shown to make breathing tests better, helping those who take Kaftrio breathe more easily. This improves their overall quality of life. Repeated lung infections cause the main problems in CF. We don’t yet know how Kaftrio might change these lung infections, and how this might change the relationship between ‘good’ and ‘bad’ germs in the lungs. The main idea of this study is to understand how Kaftrio might change lung infections, and how...