February 26, 2025

Future research on Cystic Fibrosis in the UK

Cystic Fibrosis (CF) is an incurable, life-limiting condition, affecting over 11,300 people in the UK costing the NHS millions in care.

Unbeknown to many, a game changing drug called Kaftrio was made available on the NHS at the start of the pandemic which has transformed the lives of many patients. People who thought all their lives that they would die in their 20s or 30s are now living to have families and careers and the change of a much longer and fuller life. But behind this wonderful success story lies huge challenges. Some patients don’t have the right genotype to respond to Kaftrio and others can’t tolerate the drug. Also with longer life expectancy, patients face a new and daunting list of health issues that come with living longer with a chronic disease. Research on CF now needs to adapt to this new era.

To mark the end of Cystic Fibrosis Trust’s 60^th anniversary year the SMC invited the Cystic Fibrosis Trust and a panel of leading academics and charity experts to discuss the future of Cystic Fibrosis and the charity’s new research goals, alongside the publication of a new briefing: The Future of Cystic Fibrosis Care in the UK. The briefing covered the research goals being developed to: –

1. Develop effective treatments for all
2. Improve the diagnosis and treatment of CF lung infections and maintain lung health
3. Treat all of the symptoms of CF throughout the body
4. Enable people with CF to live longer, healthier lives

Speakers included:

Dr Lucy Allen, Director of Research and Healthcare Data, Cystic Fibrosis Trust

Professor Jane Davies, Honorary Consultant in Paediatric Respiratory Medicine, Royal Brompton Hospital and Professor of Paediatric Respiratory Medicine and Experimental Medicine, Imperial College London

Dr Frederick Frost, Senior Lecturer, University of Liverpool and Honorary Consultant Respiratory Physician

David Ramsden, Chief Executive, Cystic Fibrosis Trust