First launched in 2016, the JLA PSP set out to identify areas of research in CF not currently being met, inviting the CF community around the world to submit their ideas with the hashtag #QuestionCF.
In 2017, the team, led by Professor Alan Smyth, University of Nottingham, published a shortlist of the top 10 priorities, drawn from over 1,000 suggestions from more than 600 people in 21 different countries.
See the full Top 10 list.
Professor Smyth highlighted the impact of the community’s involvement, which has already led to some research getting underway: “#QuestionCF was a big conversation between health professionals and the patient community which led to a ‘top 10’ list of questions for CF research, and focuses on clinical research (such as trials) rather than lab research.
“The community had some very strong views which were often different from health professionals! We are delighted that this list has already been adopted by some important research funders.”
Now the team wants to work with the CF community through a series of surveys and focus groups to develop four of the 10 questions identified in Phase I into more specific questions that are capable of being answered through clinical trials:
- Q1 What are the effective ways of simplifying the treatment burden of people with cystic fibrosis?
- Q2 How can we relieve gastro-intestinal (GI) symptoms, such as stomach pain, bloating and nausea in people with cystic fibrosis?
Q6 What effective ways of motivation, support and technologies help people with Cystic Fibrosis improve and sustain adherence to treatment?
Q7 Can exercise replace chest physiotherapy for people with cystic fibrosis?
Professor Smyth said: “We felt that we would like the patient and health care communities to tell us more of what they think about these questions. They were more complex than the others and they raise a big ‘basket’ of issues!”
The team hopes the research questions identified will lead to researchers and funders taking them forward to projects in labs and clinics.
The second phase, which is part-funded by the Trust, launched on 21 March with a survey to explore Question 1 – the treatment burden. Everyone living with CF, as well as partners, parents and health care teams, are invited to get involved. As Professor Smyth adds, “Don’t hold back – tell us what you think!”
Lorna Allen, Patient and Public Involvement Coordinator for the Trust’s Clinical Trials Accelerator Platform, said: “#QuestionCF is a great example of the value and impact of involving those living with CF in research. We encourage researchers to include these involvement opportunities in a variety of projects via our Trials Accelerator initiative.” See cysticfibrosis.org.uk/ppi for more information.
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