失代偿肝硬化研究网络(UK- clif):在英国建立肝病学试验共识。

NIHR open research Pub Date : 2024-11-06 eCollection Date: 2024-01-01 DOI:10.3310/nihropenres.13669.1
Helen Crisp, Oliver Tavabie, Yvanne Enever, Richard Allen, Milton Silverman, Juan Acevedo, Abhishek Chauhan, Brian Hogan, Vishal Patel, Rajeshwar Mookerjee, Gavin Wright, Richard Aspinall, Stuart McPherson, Andrew Cook, Rajiv Jalan, Gautam Mehta
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引用次数: 0

摘要

在英国,肝病是导致死亡的一个主要原因,而且在不断增加。英国慢性肝功能衰竭网络(UK- clif)是一个多利益相关方网络,旨在推进肝硬化研究,重点关注高患病率或研究活动有限的地理区域。这个过程包括通过传播和滚雪球抽样技术发展网络,监测网络发展和参与者之间的联系,这是在两次在线会议上发展起来的。网络成员包括来自患者、护理人员、临床医生、研究人员、研发专业人员、行业代表和第三部门的代表。随后,与网络参与者举行了两次便利的面对面讲习班。使用世界咖啡研究会方法和参与者点投票来确定优先领域和共识:(i)肝硬化临床试验的研究基础设施,(ii)影响研究交付的临床因素,以及(iii)未来试验的研究重点。专题分析表明,对以患者为中心的试验材料的需求、临床医生参与研究的资源缺乏以及肝硬化住院治疗标准的可变性是肝硬化临床试验的障碍。UK-CLIF的未来活动包括参与肝硬化住院治疗的质量标准制定过程,并协调詹姆斯·林德联盟优先设定伙伴关系,以制定肝硬化的研究问题。
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Decompensated Liver Cirrhosis Research Network (UK-CLIF): Building consensus for hepatology trials in the UK.

Liver disease is a major, and increasing, cause of death in the UK. The UK Chronic Liver Failure network (UK-CLIF) was developed as a multi-stakeholder network with the aim to advance cirrhosis research, with emphasis on geographical areas of high disease prevalence or limited research activity. The process involved network development through dissemination and snowball sampling techniques, with monitoring of network development and connections between participants, developed over two online meetings. Network membership included representatives from patients, carers, clinicians, researchers, R&D professionals, industry representatives, and the third sector. Subsequently, two facilitated in-person workshops were conducted with network participants. World Café methodology and participant dot voting was used to develop areas of priority and consensus in: (i) research infrastructure for cirrhosis clinical trials, (ii) clinical factors affecting research delivery, and (iii) research priorities for future trials. Thematic analysis demonstrated that the need for patient-centric trial materials, a lack of resource for clinicians to participate in research, and variability in the standard of inpatient care for cirrhosis, were barriers for cirrhosis clinical trials. Future activities for UK-CLIF include participation in a process of quality standard setting for inpatient care for cirrhosis, and coordination of a James Lind Alliance Priority Setting Partnership to develop research questions for liver cirrhosis.

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