Our Trial Coordinators play a key part in supporting participation in CF clinical trials. We spoke to Debbie Miller, Early Phase Trial Coordinator at the CF Centre in Edinburgh about her role.
Lynsey Beswick, Public Affairs and Advocacy Manager at the Trust, reflects on the year since the landmark deal for access to Kaftrio in England was announced amidst the COVID-19 pandemic.
Providing relief for the digestive symptoms of CF was a health priority identified by the CF community in a survey published in 2017. Today we’ve published a Research in focus report which highlights Trust-funded research underway to increase our understanding of these symptoms and to develop more effective treatments for them.
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Jacqueline Ali, Head of Information, Support and Programmes
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This year’s CF Week is all about how, as a community, we won’t stop: whether that’s researching for ground-breaking discoveries, supporting the physical and mental challenges of cystic fibrosis (CF), or responding to the varying needs of the diverse CF population. Here, Jacqueline Ali, Head of Information, Support and Programmes at the Trust, talks about work the Trust is doing to ensure our information and support services reflect the diversity of the CF community.
Exercise and physical activity are beneficial for people with cystic fibrosis (CF), as it helps with airway clearance and quality of life. This project will establish if an internet-based physical activity logging programme (called ‘ActivOnline’) increases physical activity participation in people with CF aged 12-35 years. This programme has been trialed in a small group of adults with CF, and we now want to see if this is effective in a younger population, as well as a wider group of young adults. The investigations for this study includes three separate rounds of some questionnaires, wearing a physical activity monitor for...
Study results summary
This study evaluated whether an online physical activity intervention was effective at increasing physical activity in adolescents and adults ages 12 to 35 with CF. This study was forced to pause due to the COVID-19 pandemic in 2020 and ultimately the study was terminated after the subsequent recruitment efforts failed to recruit participants.
