In order to identify the top 10 priorities for clinical research in cystic fibrosis researchers from Evidence Based Child Health at the University of Nottingham worked with people with CF, their families, the CF Trust, cf/Aware and clinical teams. We wanted to enable a conversation to identify what people living and working with cystic fibrosis felt were the crucial areas that research should be looking at. We asked ‘What questions on CF would you like to see answered by research?’. The #QuestionCF project was born.
“I assumed that the people who do CF research would understand very well what it is like to have CF but they don’t always have a good understanding of what it is like to live with the condition. The truth is they won’t, unless we tell them!”Oli, original steering committee member and person with CF.