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. 2023 Aug;78(8):840-843.
doi: 10.1136/thorax-2023-220100. Epub 2023 Jun 7.

A refresh of the top 10 research priorities in cystic fibrosis

Nicola Jane Rowbotham  1 , Sherie Smith  2 , Zoe C Elliott  3 , Belinda Cupid  4 , Lorna J Allen  4 , Katherine Cowan  5 , Lucy Allen  4 , Alan Robert Smyth  2   6
Affiliations

A refresh of the top 10 research priorities in cystic fibrosis

Nicola Jane Rowbotham et al. Thorax. 2023 Aug.

Abstract

In 2018 we published the James Lind Alliance (JLA) top 10 priorities for clinical research in cystic fibrosis (CF), chosen jointly by the patient and clinical communities. These priorities have led to new research funding. To establish whether priorities have changed with novel modulator therapies, we undertook an online international update through a series of surveys and a workshop. Patients and clinicians (n=1417) chose the refreshed top 10 from 971 new research questions (suggested by patients and clinicians) and 15 questions from 2018. We are working with the international community to promote research based on these refreshed top 10 priorities.

Keywords: Cystic Fibrosis.

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Conflict of interest statement

Competing interests: NJR reports support from Cystic Fibrosis Trust for attending meetings. KC reports consultancy fees for facilitation services with James Lind Alliance and CF Trust. ARS reports a Vertex Pharmaceuticals Investigator Sponsored Study Award (paid to University of Nottingham) and consultancy fees for Viatris Advisory Board (paid to University of Nottingham), a patent (Camara M, Williams P, Barrett D, Halliday N, Knox A, Smyth A, Fogarty A, Barr H, Forrester D. Alkyl quinolones as biomarkers of pseudomonas aeruginosa infection and uses thereof. PubChem [Internet]. Bethesda (MD): National Library of Medicine (US), National Center for Biotechnology Information; 2004-. PubChem Patent Summary for US-2016131648-A1; [cited 2020 Nov. 17]. Available from: https://pubchem.ncbi.nlm.nih.gov/patent/US-2016131648-A1) and participation on the US CF Foundation data safety monitoring board.

Figures

Figure 1
Figure 1
Flow chart showing question processing at the different stages of the James Lind Alliance Priority Setting Partnership refresh in CF.
Figure 2
Figure 2
The top 10 questions for research in cystic fibrosis in 2018 and 2023. Those marked in bold feature in both.
See this image and copyright information in PMC

References

    1. Rowbotham NJ, Smith S, Leighton PA, et al. . The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers. Thorax 2018;73:388–90. 10.1136/thoraxjnl-2017-210473 - DOI - PMC - PubMed
    1. James Lind Alliance . You said, we did: how the cystic fibrosis priorities have been addressed since they were agreed in 2017. National Institute for Health Research; 2021. Available: https://www.jla.nihr.ac.uk/news/you-said-we-did-how-the-cystic-fibrosis-...
    1. James Lind Alliance . The JLA lab. National Institute for health research; 2023. Available: https://www.jla.nihr.ac.uk/jla-lab.htm
    1. James Lind Alliance . Cystic fibrosis research priorities refresh protocol. National Institute for Health Research; 2021. Available: https://www.jla.nihr.ac.uk/documents/cystic-fibrosis-research-priorities...
    1. James Lind Alliance . JLA guidebook version 10. National Institute for Health Research; 2021. Available: https://www.jla.nihr.ac.uk/jla-guidebook/