Patients with cystic fibrosis, their families and health professionals are being offered the opportunity to shape future research into the condition through the launch of a new online survey.
The new survey, which has been devised by the James Lind Alliance Cystic Fibrosis Priority Setting Partnership and is being led by a team at The University of Nottingham, asks people for their views on the most urgent questions that need to be answered about cystic fibrosis (CF) and its treatment.
The questions will then be collated and the cystic fibrosis community will be asked to rank them in order of importance as part of a follow up exercise. The top 10 priority list for CF research will then be published in early 2017.
Professor Alan Smyth, Professor of Child Health in The University of Nottingham’s School of Medicine and a respiratory paediatrician at Nottingham University Hospitals NHS Trust is one of the partners involved in the new initiative.
He said: “I am an active researcher in cystic fibrosis and I am excited and energised at the prospect of working so closely with the community to decide the top 10 questions we should be addressing with our research.”
Cystic fibrosis is the commonest life-limiting, inherited condition in the UK, affecting around 10,000 people. Recent improved survival is at the expense of heavy treatment burden. Patients are affected by recurrent chest infections causing progressive lung damage, as well as difficulties absorbing food. Many treatment decisions in CF care are not supported by scientific evidence from clinical trials and there is no unified strategy to fill these evidence gaps, with research driven by the interests of clinical investigators and financial considerations.
Traditionally, patients’ views, particularly around quality of life, have not been considered when setting research agendas.
Katie Gathercole, who has cystic fibrosis, said: “I am delighted to be a member of the Priority Setting Partnership (PSP) steering committee. I think it represents an important step forward for the engagement of the CF community in research activities.
“Up to now, decisions about what clinical research should take place have been driven by the medical and pharmaceutical sectors. The PSP changes this approach and enables other members of the CF community, such as patients and parents, to be part of these decisions.”
The Cystic Fibrosis PSP is an independent group of patients and health professionals funded by The University of Nottingham, the Cystic Fibrosis Trust and Nottingham Hospitals Charity. It is being overseen and monitored by the not-for-profit organisation the James Lind Alliance, which is managed by the National Institute for Health Research (NIHR) Evaluation, Trials and Studies Co-ordinating Centre.
The survey is now open online and will remain open until June 2016. It can be accessed at: https://www.surveymonkey.co.uk/r/QuestionCF1
The survey can be completed online or on paper and all responses will be included in the process to find the Top 10 priorities. The results of the first survey will be released in September 2016.
More information about this survey and the project as a whole can be found online at www.cfunite.org/questionCF
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