Article Text
Abstract
There remain many treatment uncertainties in cystic fibrosis (CF). With limited resources, research should focus on questions which are most important to the CF community. We conducted a James Lind Alliance Priority Setting Partnership in CF. Research questions were elicited and then prioritised in successive surveys. A workshop agreed the final top 10. Online methods avoided cross infection and widened participation. The elicitation survey had 482 respondents (1080 questions) and prioritisation survey 677 respondents. Participants were drawn equally from the patient and clinical communities globally. We have achieved a consensus on 10 research priorities which will be attractive to funders.
- cystic fibrosis
- patient engagement
- research priorities
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Footnotes
Contributors All authors contributed to the design, recruitment, data analysis and in the preparation of the manuscript.
Funding The project was funded by a CF Trust Venture and Innovation Award (VIA025) and grants from the University of Nottingham and Nottingham Hospitals Charity. NJR is an NIHR Academic Clinical Fellow.
Competing interests Outside the submitted work: NJR reports non-financial support from Teva. TD reports personal fees from Raptor pharmaceuticals and non-financial support from Teva. UP reports personal fees from Dewi WHughes Ltd NHS Mentoring. ARS reports personal fees from Vertex, PTC, Roche and Gilead. In addition, ARS has a patent Application No. 14737297.3 (in Europe) Biomarkers for Pseudomanas aeruginosa for The University of Nottingham pending and has taken part in clinical trials sponsored by Vertex, Raptor and Insmed. Other authors have no competing interest to decline.
Ethics approval The University of Nottingham Research Ethics Committee deemed this work not to require ethical approval.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement We plan to make anonymised data available within one year of publishing this article via an online repository such as Dryad or upon reasonable application.