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...
Join more than 50,000 runners for this 13.1 mile charity run lined with thousands of spectators cheering you on! Join Team CF Trust for the Great North Run today.
Strong Beginnings is a series of free online events for parents and carers of babies and young children with cystic fibrosis (CF). Find out more about how you can get involved!