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

Nicola J. Rowbotham, Sherie Smith, Paul A. Leighton, Oli C. Rayner, Katie Gathercole, Zoe C. Elliott, Edward F. Nash, Tracey Daniels, Alistair J.A. Duff, Sarah Collins, Suja Chandran, Ursula Peaple, Matthew N. Hurley, Keith Brownlee, Alan R. Smyth*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

176 Citations (Scopus)
16 Downloads (Pure)

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.

Original languageEnglish
Pages (from-to)388-390
Number of pages3
JournalThorax
Volume73
Issue number4
Early online date04 Aug 2017
DOIs
Publication statusPublished - Apr 2018
Externally publishedYes

Bibliographical note

Funding Information:
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.

Publisher Copyright:
© Article author(s) 2018.

Keywords

  • cystic fibrosis
  • patient engagement
  • research priorities

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine

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