Our CF priority titles list has been informed by a James Lind Alliance Priority Setting Partnership in cystic fibrosis (CF). This exercise involved over 600 people with CF and clinicians in over 23 countries1. Participants were first asked to suggest priority questions for CF research through a free text response to the question: “What question about CF would you most like to see answered by research?” There were over 1000 suggestions! We excluded questions which had already been answered – as shown by our overview of CF systematic reviews and guidelines2. We then grouped questions under an “umbrella question” and used a Delphi approach to reduce the questions to a manageable number for prioritisation. The patient and clinical community then took part in a prioritisation survey and the top 10 research questions were selected in a final workshop. You can find a document linking our existing reviews and protocols as well as our priority titles to the top 10 here.
1. Rowbotham NJ, Smith S, Leighton PA, Rayner OC, Gathercole K, Elliott ZC, Nash EF, Daniels T, Duff AJA, Collins S, Chandran S, Peaple U, Hurley MN, Brownlee K, Smyth AR. The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers. Thorax 2018; 73(4): 388-90.
2. Rowbotham NJ, Smith S, Prayle AP, Robinson KA, Smyth AR. Gaps in the evidence for treatment decisions in cystic fibrosis: a systematic review. Thorax 2018; (epub ahead of print).
Haemoglobinopathies, Coagulopathies and Inborn errors of metabolism
For the remaining areas of our scope, we work closely with our clinical editors and consumer peer reviewers to identify topics of interest and develop review questions based on these areas. We also closely follow new therapies and trials in each of the areas of our scope and plan to regularly interrogate our respective trials registers to identify areas where there is evidence but not yet any review. We will then collaborate with our stakeholders to establish how these can generate relevant priority reviews. We are in contact with the authors of the James Lind PSP on bleeding disorders which we hope will provide additional coagulopathy priority topics and review titles.
You can view a list of all our vacant priority titles here.