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

Rowbotham, Nicola J.; Smith, Sherie; Leighton, Paul; Rayner, Oliver C.; Gathercole, K.; Elliott, Z.C.; Nash, Edward F.; Daniels, T.; Duff, A.J.A.; Collins, S.; Chandran, S.; Peaple, U.; Hurley, M.N.; Brownlee, K.; Smyth, Alan R.

Authors

Nicola J. Rowbotham nicola.rowbotham@nottingham.ac.uk

SHERIE SMITH sherie.smith@nottingham.ac.uk
Cochrane Systematic Reviewer

PAUL LEIGHTON PAUL.LEIGHTON@NOTTINGHAM.AC.UK
Associate Professor of Applied Health Services Research

Oliver C. Rayner

K. Gathercole

Z.C. Elliott

Edward F. Nash

T. Daniels

A.J.A. Duff

S. Collins

S. Chandran

U. Peaple

M.N. Hurley

K. Brownlee

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ALAN SMYTH alan.smyth@nottingham.ac.uk
Professor of Child Health



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.

Citation

Rowbotham, N. J., Smith, S., Leighton, P., Rayner, O. C., Gathercole, K., Elliott, Z., …Smyth, A. R. (2018). The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and health care providers. Thorax, 73(4), 388-390. https://doi.org/10.1136/thoraxjnl-2017-210473

Journal Article Type Article
Acceptance Date Jan 19, 2017
Online Publication Date Aug 4, 2017
Publication Date Apr 30, 2018
Deposit Date Jun 26, 2017
Journal Thorax
Print ISSN 0040-6376
Electronic ISSN 1468-3296
Publisher BMJ Publishing Group
Peer Reviewed Peer Reviewed
Volume 73
Issue 4
Pages 388-390
DOI https://doi.org/10.1136/thoraxjnl-2017-210473
Keywords Cystic fibrosis, Patient engagement, Research priorities
Public URL http://eprints.nottingham.ac.uk/id/eprint/43772
Publisher URL https://thorax.bmj.com/content/73/4/388
Copyright Statement Copyright information regarding this work can be found at the following address: http://eprints.nottingham.ac.uk/end_user_agreement.pdf