What do you think should be the priorities for future CF research?
You said, we did
Five years ago, the Trust worked with the James Lind Alliance and the QuestionCF team, to find out the top research priorities of people with CF, as well as their families, carers and CF teams. These priorities have helped us decide what research we fund and they have allowed doctors and scientists to focus the direction of their studies. This research is ongoing, and you can read about some examples of the exciting work underway in a recent review article.
Now we are working with researchers at the University of Nottingham, people from the CF community and the James Lind Alliance team at the National Institute for Health Research (NIHR) again in the QuestionCF project, to refresh these priorities and help shape the direction of future research.
Time for a refresh?
Many people with CF now have access to CFTR modulators, and due to the pandemic, many people’s care will have changed, for example with remote clinic appointments and health monitoring at home. The research priorities need to be current and they need to be relevant, so it is time to look at them again.
“We felt it was timely and really important that we reached out to the CF community, clinicians and researchers again to update and refresh the priorities for CF, so that together through research we can ensure everyone with CF can live a life without limits,” said Dr Lucy Allen, our Director of Research.
Tell us about your CF research priorities
We’ve set up a survey to find out your views on CF research. You can complete this online, or you can request a paper copy if you prefer. We want to know which research priorities are the most important to you. Are they the same as they were five years ago? Would you reshuffle the top priorities in a different order? Or are there new priorities that weren’t on the list before?
You can take part now, by completing an online survey. If you would like more time to reflect on what you want to say, there’s plenty of time to do this, as the survey is open for a month, until 20 February.
If you would like an offline PDF or paper copy of the survey, please contact the QuestionCF team by email on questionCF@nottingham.ac.uk.
Finding answers to these questions will help us make sure we’re on track to help people with CF live a life unlimited.
More detail about the survey
What questions will I be asked in the survey?
The survey will ask you a bit about yourself and then ask you about your research priorities.
There are three questions about research priorities.
- You will be asked to pick from a list of already-identified research questions. You can pick as many as you like.
- Next, if you’ve picked any research questions, you’ll be asked to choose your top three, based on your own knowledge and experience of CF.
- Finally, if your research priorities aren’t on the list, there’s space for you to tell us about your research priorities in your own words.
Remember, there are no right or wrong answers in this survey, we want to hear your views.
Can people under 18 take part?
Absolutely! All are welcome to take part but you may need an adult to help with the reading and writing the answers. Every family member can take part individually if they wish.
Why does it matter?
We’re keen to make sure that the voice of the community is heard loud and clear when it comes to CF research. We want to ensure the research we fund is relevant to people with CF and those that support them. Doctors and scientists can use these priorities to help design their next research studies – and the Trust and other funders will use it to ensure we fund research studies that answer your questions.
I don’t have CF, do you still want to hear from me?
Yes! We’re asking for people with CF, parents, family members, friends, CF teams and university or hospital-based researchers to choose their priorities for research.