There has been considerable change in Cystic Fibrosis treatments since these original priorities were agreed in 2017, as well as a considerable amount of research done against those agreed priorities. The Cystic Fibrosis community is now working to agree an update to these priorities, in the Cystic Fibrosis Research Priorities Refresh.
In Cystic Fibrosis care there are many situations where we do not know which treatment is best. 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 at the time. 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. Read more about the results in this press release.
After the success of the PSP, a second phase took a more detailed look at four of the Top 10 priorities to find out what they mean to the people living and working with cystic fibrosis. The PSP completed more in-depth surveys for priorities 1, 2, 6 and 7. They received 2,023 responses in total across the four surveys. The results were used to formulate more specific research questions which are meaningful to the cystic fibrosis community. They then asked the CF community to tell them if the questions were the right ones to be taken forward in a survey that closed on 30th September 2019.
The figure below shows the rankings that respondents gave the specific research questions, and how they felt about the likelihood of patients taking part in the trials.
Professor Alan Smyth explains the need for a
Priority Setting Partnership in Cystic Fibrosis
How the top 10 priorities were identifed