Rebecca Wright is the Patient and Public Involvement and Engagement (PPIE) Officer within the Trailfinder-CF Innovation Hub, based at the University of Liverpool. We spoke to her to find out more about her role and how the CF community are shaping research at the hub.
The Translational Innovation Hub Network for CF Lung Health and Infection (or CF Lung Health Network for short) is made up of four Innovation Hubs, which are all working to find new ways to predict, prevent, diagnose and treat cystic fibrosis lung infections. Meet some of the people who make sure the CF community are truly at the heart of the research.
The All-Wales Adult Cystic Fibrosis Centre, based at University Hospital Llandough, received one of just 49 saplings from the 49-foot tree, gifted by National Trust’s Trees of Hope initiative.
This study is a continuation of parent study (VX22-445-122) looking at the long term safety, tolerability, efficacy, and pharmacodynamics of Kaftrio in children with cystic fibrosis ages 12 months and older. This treatment is already approved for use in the UK for certain groups of people with CF, but has not yet been approved for children less than 24 months. Participants from the parent study who chose to take part in this extension will take Kaftrio in the morning and ivacaftor (IVA) in the evening. Note: Recruitment to this study is by invitation only.
Trials Tracker ID
TT014545
Age range
12 months and older
Length of participation
Up to 100 weeks: 96 weeks of treatment and 4 weeks of follow-up
Our body image booklet features people with cystic fibrosis discussing how they feel about their own bodies and how they have dealt with body image challenges.
