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Multicenter Study
. 2018 Apr;73(4):388-390.
doi: 10.1136/thoraxjnl-2017-210473. Epub 2017 Aug 4.

The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers

Nicola J Rowbotham  1 , Sherie Smith  1 , Paul A Leighton  2 , Oli C Rayner  3 , Katie Gathercole  3   4 , Zoe C Elliott  5 , Edward F Nash  6 , Tracey Daniels  7 , Alistair J A Duff  8 , Sarah Collins  9 , Suja Chandran  10 , Ursula Peaple  11 , Matthew N Hurley  1 , Keith Brownlee  12 , Alan R Smyth  1
Affiliations
Multicenter Study

The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers

Nicola J Rowbotham et al. Thorax. 2018 Apr.

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.

Keywords: cystic fibrosis; patient engagement; research priorities.

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Conflict of interest statement

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.

Figures

Figure 1
Figure 1
(A) James Lind Alliance Priority Setting Partnership in CF. Flow chart of submitted questions, showing the process for selecting the final top 20. (B) The top 10 questions for clinical research in cystic fibrosis.
See this image and copyright information in PMC

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