Choosing your top research priorities – your questions answered

What is the QuestionCF survey all about?

We’re asking for your help to draw up a list of research priorities - that is a wish list of topics that people with CF, their families and friends, researchers, and CF teams all feel are important. The results will help us and other research funders decide what research to fund. For researchers, it will provide a new focus and direction for their work.

Can anyone complete the survey?

We really want to hear from everyone who has an interest in CF. Everyone with CF can take part, and so can people close to them. Researchers and CF teams are also being asked to share their views.

Although this survey is part of a bigger project, everyone can take part, even if you didn’t fill in the first survey. The survey is open to people of any age, including children. Young children may need the help of their parents to complete it. You can fill it in more than once for each person’s views, but please don’t vote more than once each.

This survey is anonymous, researchers looking at the results won’t be able to work out who gave which answers. You can read more about this in the privacy policy on the QuestionCF website.

What do I have to do to take part?

The survey can be completed on your phone, tablet or computer. If you don’t have a computer and would like to fill in a paper copy, please get in touch with us so we can arrange this.

At the beginning you’ll be asked a bit about yourself and your connection to CF.

• You’ll then be shown a list of around 70 research questions. Please tick all the questions that you feel are the most important.
• On the next screen, you’ll be shown the reduced list of all the questions you ticked. You’ll be asked to pick up to 10 questions that mean the most to you from this list.
• In the last stage of the survey, you’ll be asked to put in order (rank) the questions you chose as most important, with your number 1 as your top priority.

Tell us your top 10 research priorities

Where did the questions in the survey come from?

The research questions in the survey were collected from people who responded to our first survey in January. It also includes questions from the 2017 priority list that people told us were still important to them this time around.

The QuestionCF team received over 900 new questions in the survey in January – that’s too many to ask everyone to read through in this survey! Where people asked about similar things, the researchers worded a combined question that covered all of the slightly different questions submitted. They called these ‘umbrella questions’. Because the QuestionCF team have grouped together answers, the exact wording from your or someone else’s specific question may not appear in the survey. It isn’t possible to add any more new research questions at this stage.

What happens to the results?

After the survey closes on 13 October, everyone’s list of research priorities will be combined. A bit like when each country’s votes are combined into the master scoreboard at the Eurovision Song Contest! Questions within the overall top 20  of combined priorities will be discussed and reviewed at an online workshop in November, where a final top 10 list will be agreed. After this the results will be shared with everyone, and we can begin to plan how to answer the questions through research.

How can I take part in the QuestionCF workshop in November?

The workshop is taking place online on 21 November and 22 November. People will be asked to attend on both days. You can register your interest to be selected as a representative of the CF community in the workshop discussions. It’s a great chance to consider the views of people living with CF, alongside clinicians and researchers and influence the future of CF research.

Tell us you’re interested in attending the workshop

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.

Your donations help us fund vital research. Donate today to help everyone with CF live a life unlimited.

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