Evidence Based Child Health Group, University of Nottingham, Nottingham, UK.
School of Medicine, NIHR Research Design Service for the East Midlands, University of Nottingham, Nottingham, UK.
Thorax. 2018 Apr;73(4):388-390. doi: 10.1136/thoraxjnl-2017-210473. Epub 2017 Aug 4.
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.
囊性纤维化 (CF) 的治疗仍存在许多不确定性。由于资源有限，研究应集中在对 CF 社区最重要的问题上。我们在 CF 中进行了一项詹姆斯林德联盟优先事项设定伙伴关系。通过连续的调查来引出和优先考虑研究问题。一个研讨会确定了最终的前 10 名。在线方法避免了交叉感染，扩大了参与度。征求意见调查有 482 名受访者（1080 个问题），而优先排序调查有 677 名受访者。参与者来自全球的患者和临床社区。我们已经就 10 项研究重点达成共识，这些重点将对资助者具有吸引力。
