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.

doi:10.1136/thoraxjnl-2017-210473

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

Mrs SHERIE SMITH sherie.smith@nottingham.ac.uk
COCHRANE SYSTEMATIC REVIEWER

Dr 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

Alan R. Smyth

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., Nash, E. F., Daniels, T., Duff, A., Collins, S., Chandran, S., Peaple, U., Hurley, M., Brownlee, K., & 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
Publicly Available Date	Aug 9, 2018
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	https://nottingham-repository.worktribe.com/output/839791
Publisher URL	https://thorax.bmj.com/content/73/4/388
Contract Date	Aug 9, 2018