Bringing together people who have cystic fibrosis (CF), their families and friends plus the health professionals who look after them, to identify and focus the future of research in CF treatment.
A major survey was launched on 30th March 2016. The survey gives individuals, families, clinicians and other professionals the opportunity to influence research into the treatment and care of Cystic Fibrosis.
The survey has been developed by the James Lind Alliance Cystic Fibrosis Priority Setting Partnership, with partners including charities, health professionals and patients.
Respiratory Paediatrician Alan Smyth said “I am an active researcher in cystic fibrosis.I am excited and energised at the prospect of working closely with the community to decide the top ten questions for research!"
Katie Gathercole, who has cystic fibrosis, said “I am delighted to be a member of the 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.”
Cystic fibrosis (CF) is the commonest, life limiting, inherited condition in the UK. Recent improved survival is at the expense of heavy treatment burden. Patients particularly struggle with recurrent chest infections, causing progressive lung damage, plus difficulties absorbing food. Many treatment decisions in CF care are not supported by clinical trial data. There is no unified strategy to fill these evidence gaps, with research driven by interests of clinical investigators and financial considerations.
Traditionally patient views, particularly around quality of life, have not been considered when setting research agendas. We believe this needs to change.
We feel that it is essential that research into cystic fibrosis should focus on the questions that are important to the people who have cystic fibrosis, their families and friends, and the health professionals that treat them.
The survey will be open until June 2016 and can be accessed here: https://www.surveymonkey.co.uk/r/QuestionCF1 .
The survey can be completed on-line or on paper, with all responses being included in a process to find the top ten priorities.
This is a unique opportunity for people to say what questions they think are important in the treatment of cystic fibrosis. All the questions we receive will be collated and analysed to check that the answers do not already exist. We will then ask the CF community to rank these in order of importance in a second survey. These unanswered questions (uncertainties) will be made publicly available helping to shape the future of CF research. We will release a top ten priority list in early 2017.
Further information about this survey and our project as a whole can be found in the information sheet provided or on our website www.cfunite.org/questionCF
The results of the first survey are planned for release in September 2016.
The PSP team will sort the responses into categories and take out any questions which have already been answered. We will then open a second online survey which will ask you to rank the questions we received in order of priority.
Find out more:
CF PSP Coordinator: Maggie McPhee
Email: cysticfibrosis@nottingham.ac.uk
Phone: 0115 8230605
Website: www.cfunite.org/questioncf
Twitter: @questionCF
Posted on Saturday 9th April 2016