Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials

Davies, Gwyneth; Rowbotham, Nicola J; Smith, Sherie; Elliot, Zoe C; Gathercole, Katie; Rayner, Oli; Leighton, Paul A; Herbert, Sophie; Duff, Alistair Ja; Chandran, Suja; Daniels, Tracey; Nash, Edward F; Smyth, Alan R

doi:10.1016/j.jcf.2019.10.025

All Outputs (3)

Working in partnership with the patient community to develop outline trial designs in CF (2021)
Journal Article
Rowbotham, N. J., Smith, S., Davies, G., Leighton, P., Rayner, O., Elliott, Z., …Smyth, A. R. (2022). Working in partnership with the patient community to develop outline trial designs in CF. Journal of Cystic Fibrosis, 21(2), 300-301. https://doi.org/10.1016/j.jcf.2021.12.008

In a collaboration between health professionals and the patient community, we previously identified the Top 10 priorities for clinical research in CF [ [1] ]. Here, we have used a similar approach to explore four of these priorities further and sugge... Read More about Working in partnership with the patient community to develop outline trial designs in CF.

Exploring the challenges of accessing medication for patients with cystic fibrosis (2021)
Journal Article
Herbert, S., Rowbotham, N., Smith, S., Wilson, P., Elliott, Z., Leighton, P., …Smyth, A. R. (2022). Exploring the challenges of accessing medication for patients with cystic fibrosis. Thorax, 77(3), 295-297. https://doi.org/10.1136/thoraxjnl-2021-217140

Reducing treatment burden in cystic fibrosis (CF) is the top research priority for patients and clinicians. Difficulty accessing medication is one aspect of treatment burden. We investigated this with an online survey available globally for patients... Read More about Exploring the challenges of accessing medication for patients with cystic fibrosis.

Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials (2019)
Journal Article
Davies, G., Rowbotham, N. J., Smith, S., Elliot, Z. C., Gathercole, K., Rayner, O., …Smyth, A. R. (2020). Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials. Journal of Cystic Fibrosis, 19(3), 499-502. https://doi.org/10.1016/j.jcf.2019.10.025

In a recent James Lind Alliance Priority Setting Partnership in cystic fibrosis (CF) the top priority clinical research question was: “What are effective ways of simplifying the treatment burden of people with CF?” We aimed to summarise the lived exp... Read More about Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials.