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Research letter
The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers
  1. Nicola J Rowbotham1,
  2. Sherie Smith1,
  3. Paul A Leighton2,
  4. Oli C Rayner3,
  5. Katie Gathercole3,4,
  6. Zoe C Elliott5,
  7. Edward F Nash6,
  8. Tracey Daniels7,
  9. Alistair J A Duff8,
  10. Sarah Collins9,
  11. Suja Chandran10,
  12. Ursula Peaple11,
  13. Matthew N Hurley1,
  14. Keith Brownlee12,
  15. Alan R Smyth1
  1. 1 Evidence Based Child Health Group, University of Nottingham, Nottingham, UK
  2. 2 School of Medicine, NIHR Research Design Service for the East Midlands, University of Nottingham, Nottingham, UK
  3. 3 Person with Cystic Fibrosis, Plymouth, UK
  4. 4 School of Education, University of Leeds, Leeds, UK
  5. 5 Parent of Children with CF, Nottingham, UK
  6. 6 West Midlands Adult CF Centre, Heart of England NHS Foundation Trust, Birmingham, UK
  7. 7 Department of Physiotherapy, York Hull Adult CF Unit, York Teaching Hospital NHS Foundation Trust, York, UK
  8. 8 Department of Clinical Psychology, Leeds Teaching Hospital NHS Trust, Leeds, UK
  9. 9 Department of CF, Royal Brompton and Harefield NHS Trust, London, UK
  10. 10 Regional Paediatric CF Centre, Kings College Hospital, London, UK
  11. 11 National Team Specialised Commissioning, NHS England, London, UK
  12. 12 Cystic Fibrosis Trust, London, UK
  1. Correspondence to Professor Alan R Smyth, Evidence Based Child Health Group, Division of Child Health, Obstetrics & Gynaecology, Queens Medical Centre, Nottingham NG7 2UH, UK; alan.smyth{at}nottingham.ac.uk

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.

  • cystic fibrosis
  • patient engagement
  • research priorities

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/thoraxjnl-2017-210473

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    Footnotes

    • Contributors All authors contributed to the design, recruitment, data analysis and in the preparation of the manuscript.

    • 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.

    • 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.

    • Ethics approval The University of Nottingham Research Ethics Committee deemed this work not to require ethical approval.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement We plan to make anonymised data available within one year of publishing this article via an online repository such as Dryad or upon reasonable application.