We published our James Lind Alliance top ten priorities for research back in 2018. Since then there have been a lot of changes to the treatments for CF. New modulator drugs have been developed and introduced which correct the underlying defect. Not everyone is eligible for these drugs, however, and we wanted to find out if the CF community still felt that the top ten were priorities for research.
We have just carried out the first disease specific refresh of a top ten priority list by asking the CF community which of the original priorities were still important to them and if they had any new questions they felt needed answering.
The work was conducted via two online international surveys and a final workshop.
For more information on the project please see www.questioncf.org
Division of Child Health, Obstetrics & Gynaecology
The University of Nottingham
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