文献检索文档翻译深度研究
Suppr Zotero 插件Zotero 插件
邀请有礼套餐&价格历史记录

新学期，新优惠

限时优惠:9月1日-9月22日

30天高级会员仅需29元

1天体验卡首发特惠仅需5.99元

了解详情
不再提醒
插件&应用
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
高级版
套餐订阅购买积分包
AI 工具
文献检索文档翻译深度研究
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利：CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2025

由囊性纤维化患者和医疗保健提供者组成的合作伙伴关系制定的囊性纤维化十大研究重点。

The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers.

机构信息

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.

出版信息

Thorax. 2018 Apr;73(4):388-390. doi: 10.1136/thoraxjnl-2017-210473. Epub 2017 Aug 4.

DOI:10.1136/thoraxjnl-2017-210473
PMID:28778919
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5870449/
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.

摘要

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。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/dbd6/5870449/a15cee9782b4/thoraxjnl-2017-210473f01.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/dbd6/5870449/a15cee9782b4/thoraxjnl-2017-210473f01.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/dbd6/5870449/a15cee9782b4/thoraxjnl-2017-210473f01.jpg

相似文献

[1]
The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers.

Thorax. 2017-8-4

[2]
Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis.

Res Involv Engagem. 2019-8-20

[3]
Identifying and prioritising unanswered research questions for people with hyperacusis: James Lind Alliance Hyperacusis Priority Setting Partnership.

BMJ Open. 2019-11-21

[4]
Identifying research priorities in breast cancer surgery: a UK priority setting partnership with the James Lind Alliance.

Breast Cancer Res Treat. 2023-1

[5]
Research priorities for the management of broken bones of the upper limb in people over 50: a UK priority setting partnership with the James Lind Alliance.

BMJ Open. 2019-12-15

[6]
Research priorities for the management of major trauma: an international priority setting partnership with the James Lind Alliance.

BMJ Open. 2024-5-15

[7]
Research priorities for the management of complex fractures: a UK priority setting partnership with the James Lind Alliance.

BMJ Open. 2021-11-30

[8]
Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals.

BMC Pregnancy Childbirth. 2019-12-30

[9]
Priorities for research in miscarriage: a priority setting partnership between people affected by miscarriage and professionals following the James Lind Alliance methodology.

BMJ Open. 2017-8-23

[10]
Identifying primary care patient safety research priorities in the UK: a James Lind Alliance Priority Setting Partnership.

BMJ Open. 2018-2-28

引用本文的文献

[1]
Identifying research priorities for pregnant South Asian immigrants in Canada: A James Lind Alliance approach.

PLoS One. 2025-8-28

[2]
Pancreatic, nutritional and clinical outcomes in children 0-5 years with cystic fibrosis during the first 2 years of CFTR modulator therapy (PaNC): a multicentre prospective observational study protocol.

BMJ Open. 2025-7-30

[3]
Real-world improvement in ultra-low-dose thoracic computed tomography scores, systemic inflammatory markers and patient-reported outcome measures after elexacaftor/tezacaftor/ivacaftor treatment.

ERJ Open Res. 2025-6-2

[4]
A Qualitative Study to Improve How We Partner With Patients and Families in Healthcare Improvement Collaboratives.

Health Expect. 2025-6

[5]
Reducing Treatment Burden in Cystic Fibrosis: Is There a Risk to OverSIMPLIFYing Therapies?

Ann Am Thorac Soc. 2024-11

[6]
Collaboration between registered dietitians and gastroenterologists in cystic fibrosis care: Results of an international cross-sectional survey.

Nutr Clin Pract. 2025-2

[7]
A randomised crossover trial of tezacaftor-ivacaftor for gut dysfunction in cystic fibrosis with magnetic resonance imaging (MRI) outcomes: a pilot study.

NIHR Open Res. 2024-3-19

[8]
Presentation, characteristics and management of obstructive intestinal conditions in cystic fibrosis.

Frontline Gastroenterol. 2024-1-6

[9]
Perceived burden of respiratory physiotherapy in people with cystic fibrosis taking elexacaftor-tezacaftor-ivacaftor combination: a 1-year observational study.

Ther Adv Respir Dis. 2024

[10]
Scoring Abdominal Symptoms in People with Cystic Fibrosis.

J Clin Med. 2024-3-13

本文引用的文献

[1]
Gaps in the evidence for treatment decisions in cystic fibrosis: a systematic review.

Thorax. 2018-10-9

[2]
The patient voice in research - Supporting actor or starring role?

J Cyst Fibros. 2017-5

[3]
Perception of first respiratory infection with Pseudomonas aeruginosa by people with cystic fibrosis and those close to them: an online qualitative study.

BMJ Open. 2016-12-28

[4]
Advancing clinical development pathways for new CFTR modulators in cystic fibrosis.

Thorax. 2016-5

[5]
Infection prevention and control guideline for cystic fibrosis: 2013 update.

Infect Control Hosp Epidemiol. 2014-8

[6]
Finding and filling the gaps in the evidence with high quality clinical trials - the experience of one Cochrane Review Group.

J Evid Based Med. 2013-11

[7]
Schizophrenia: Patients' research priorities get funded.

Nature. 2012-7-25

[8]
Consensus development methods, and their use in clinical guideline development.

Health Technol Assess. 1998

文献AI研究员

20分钟写一篇综述，助力文献阅读效率提升50倍

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

推荐工具

医学文档翻译智能文献检索