Question CF: What happens next?

Date: 01 September 2022

The Cystic Fibrosis (CF) PSP announced its priorities in 2017.  These are now being updated in a new 'QuestionCF' project to ask people with CF, their families and clinicians which of the original priorities are still important to them, and what any new priorities might be.  The team has written this update as they approach the launch of their survey to shortlist the questions that will be discussed in the priority setting workshop.


As we approach the mid-way point of the QuestionCF project, it’s time for the halftime analysis! Here we share what’s happened in the project so far, what’s to come, and how you can get involved and play a crucial role in shaping future CF research.

  1. Previous season round up

Five years ago, QuestionCF released the top 10 research priorities in treatment decisions for people with CF. The research that identified them was a partnership between the Trust, researchers at the University of Nottingham, people from the CF community and the James Lind Alliance team at the National Institute for Health and Care Research (NIHR).

 The top priorities have guided our decisions on what research to fund. They’ve also set the topics for research studies around the world. Some amazing progress on the priorities the community identified has been made, with research underway on treatment burden, exercise, lung infections, plus many more areas.

  1. And we’re off!

We know a lot has changed for people with CF in the years since the first priority setting project. Many have access to CFTR modulators, and due to the pandemic, many people’s care will have changed. In light of this the QuestionCF team felt it was time to review the research priorities and find out what matters most to you right now, in 2022. A ‘priority refresh’ project was set up – and back in January, we asked the community to complete an online survey, with the aim to find out if the top research priorities from five years ago were still relevant today.

  1. Stoppage time…

The survey closed at the end of February and we had over 1,600 responses – a big thank you to everybody who shared their views! The researchers at the University of Nottingham have been busy sorting through all the answers: reviewing the selected priorities, categorising new suggestions and creating a long list of questions which will be shared in the second survey.

  1. The second half kicks off!

In September, there will be another chance to have your say when the second survey opens. You’ll be asked to choose your top priorities from a list of around 70 questions, representing the submissions from the first survey. Anyone can take part and it doesn’t matter if you did the first survey or not. You’ll find a link to the survey on the QuestionCF website, and at the Trust we’ll be posting a link to the survey here on our website and on our social media channels too, so watch this space!

  1. Team huddle time!

An online workshop will be held over two days in November (Monday 21 November and Tuesday 22 November) to discuss and reach consensus on the top 10 priorities that come out of the second survey. We’re keen for people with CF, families, researchers and health care professionals to all be involved in the workshop. You can express your interest in taking part by filling out this form.

  1. And the full-time whistle is blown…

The refreshed top 10 priorities will be published very soon after the workshop and will be used by researchers, clinicians and funders to shape the direction of future CF research. “We’ll use this to help determine which research studies we fund and what areas we need to push for – where there’s not enough research at the moment,” said Dr Lucy Allen, the Trust’s Director of Research.

 

  • Summary:
    It is over five years since the original Cystic Fibrosis priorities were agreed and the priorities are now being refreshed. This update from the team explains what they've done as they approach the launch of their interim priority setting survey
  • Year:
    2022