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

Rowbotham, Nicola J. and Smith, Stuart J. and Leighton, Paul and Rayner, Oliver C. and Gathercole, K. and Elliott, Z.C. and Nash, Edward F. and Daniels, T. and Duff, A.J.A. and Collins, S. and Chandran, S. and Peaple, U. and Hurley, M.N. and Brownlee, K. and Smyth, Alan R. (2017) The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and health care providers. Thorax . ISSN 1468-3296 (In Press)

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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 ten research priorities which will be attractive to funders.

Item Type: Article
Keywords: Cystic fibrosis, Patient engagement, Research priorities
Schools/Departments: University of Nottingham, UK > Faculty of Medicine and Health Sciences > School of Medicine > Division of Child Health, Obstetrics and Gynaecology
University of Nottingham, UK > Faculty of Medicine and Health Sciences > School of Medicine > Units > NIHR Research Design Service East Midlands
Depositing User: Eprints, Support
Date Deposited: 26 Jun 2017 13:05
Last Modified: 12 Jul 2017 07:48
URI: http://eprints.nottingham.ac.uk/id/eprint/43772

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