Archive: Cystic Fibrosis and Genetic Disorders

2024

Congratulations to our Co-ordinating Editor, Professor Alan Smyth, who was named 'Outstanding Researcher' at the UK CF Trust's 60th Anniversary Awards in November 2024. Alan was recognised for his long-term commitment to CF research and also for his vision to identify funders and adapt and maintain Cochrane CF following the withdrawal of NIHR funding. The only way to choose between the new multiple competing therapies which address the basic defect in CF is via impartial, well-conducted evidence syntheses. The leadership, energy, and foresight which Alan has demonstrated in continuing Cochrane CF to provide these evidence syntheses is of huge significance. Working in partnership with Cystic Fibrosis Trust, Alan also recently spearheaded a global project to identify the most important research priorities for people living with CF. This pioneering project raised the profile of the needs of the CF community, ensuring the CF community voice is at the very centre of research funding decisions.

Provision of treatment

We welcome the news that a deal has been reached between the National Health Service in England and Vertex to provide people with CF and relevant genotypes with continued access to modulators, the drugs that are crucial for treating the condition. Similar deals are expected to be announced soon for the devolved nations (Scotland, Wales and Northern Ireland). You can read our 2023 review on the use of these drugs which can correct the most common genetic defect that causes CF here or you can listen to a podcast here*.

2023

We have been successful in obtaining funding to the end of March 2025 to be able to continue with a programme of CF reviews and evidence syntheses to support guidelines. We would like to document our gratitude to the CF Foundation and the UK CF Trust for awarding us this grant. More details here.

Following the withdrawal of funding from the National Institute for Health and Care Research at the end of March 2023, the Cochrane Cystic Fibrosis and Genetic Disorders Group has focussed its activities on just cystic fibrosis in order to meet the contractual requirements of the new funding agreement. Information related to previous activities and members is presented in these pages.