James Lind Alliance

By getting involved in these priority-setting partnerships you can help shape future research.

Cystic Fibrosis Priority Setting Project 2017 

We were successfully involved in one of the first priority-setting partnerships with the James Lind Alliance to establish research priorities in the field of cystic fibrosis. When the Cystic Fibrosis PSP began its work in early 2016, it estimated that there were over 300 important research questions about cystic fibrosis treatment which were unanswered and the PSP wanted to make sure that the priorities of patients, carers and clinicians were not overlooked in future research.

In response to the initial question gathering survey, the PSP received 482 responses, which included 1,080 questions. The Cystic Fibrosis PSP published its Top 10 in January 2017. and you can see the results here. These results triggered large amounts of research funding which you can read about here.

Cystic Fibrosis Research Priorities Refresh 2022

Whilst much progress has been made in addressing many of the research priorities there is still work to be done. There have also been considerable changes in cystic fibrosis treatments and care since the original list of priorities was agreed in 2017.

We have therefore collaborated with the JLA and the UK CF Trust to refresh the list of research priorities. We have asked people living with cystic fibrosis, their carers and family members, researchers and clinicians which of the original priorities are still important to them and what new research priorities there should be as detailed on the project website. The new top 10 research priorities were published in November 2022 and you can read them here.