Every autumn thousands of researchers, doctors, healthcare professionals and charity representatives from around the world gather for an intense few days to attend the North American CF Conference – it’s the largest research conference dedicated to cystic fibrosis in the world. We asked staff at the Trust, clinicians, researchers and healthcare professionals about their highlights from the event, by asking them four questions about attending the conference.
To mark 60 years of Cystic Fibrosis Trust, the charity today publishes its latest Registry report, revealing an increase in predicted survival for those with cystic fibrosis (CF) born today, but still lagging decades behind general life expectancy. And latest research shows many are not receiving the support they need to manage the lifelong, life-limiting condition.
We want to make sure every person with CF has opportunities to take part in the latest clinical trials and access potentially life-changing new treatments as soon as possible. In this blog, Mary from our Clinical Trials Accelerator Platform team, shares the latest progress in our ‘Diversity in clinical trials’ project and how our community can get involved.
This study will evaluate the acceptability of a new CREON formulation containing pancreas powder gastro-resistant pellets for oral intake. Participants will be asked to attend 3 in person visits over the course of approximately 3 weeks. All participants will take standard CREON capsules with every meal and snack for 7 days. Then, all participants will take the test medication (new CREON formulation) for 8 days with every meal and snack. During both these periods, participants will be asked to complete paper-based diaries. Following the completion of the 8 days on the test medication, participants will also take a paper-based questionnaire...
As the weather gets colder and the nights draw in, many of us might find our motivation to exercise outside waning! Here, fitness instructor and nutritionist Kieron Smith, who has CF, shares his top tips to help you stay fit and active without even leaving the house!
Back in 1994, Rob featured on the cover of the 30th anniversary edition of CF News magazine as a six-year-old. 30 years later and he is on the cover of CF Life in our 60th anniversary year! We chatted to Rob about the changes he’s seen in his lifetime, learning resilience as a child, and looking to the future, not the past.
We spoke to Esther, whose son Joshua has cystic fibrosis (CF), about their experience of CF, why they’re interested in clinical trials and what they would consider before taking part.
This study is being done to learn more about the pancreas (an organ that helps digest food) and the intestines in infants with CF who are not treated with a Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) modulator. A CFTR modulator is a medication that works to correct the protein that is affected in CF. Participants in the study will provide stool samples which will give information about how the infants' digestive system (including the pancreas) is working, and how that may change over time. This information may inform the design and interpretation of future studies of CFTR modulator treatment during...
