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ResearchMatch志愿者的专家建议:招募创新中心的用例与创新。

Expert advice from ResearchMatch volunteers: Recruitment Innovation Center use cases and innovation.

作者信息

Tischbein Maeve, Cook Sarah K, Shyr Cathy, Benhoff Katelyn, Baig Amna, Quarles Kaysi, Boone Leslie R, Byrne Loretta M, Rodriguez Mariela, Edwards Terri, Wilkins Consuelo H, Harris Paul A

机构信息

Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USA.

Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN, USA.

出版信息

J Clin Transl Sci. 2024 Nov 29;8(1):e223. doi: 10.1017/cts.2024.659. eCollection 2024.

Abstract

Involving participants in the design of clinical trials should improve the overall success of a study. For this to occur, streamlined mechanisms are needed to connect the populations potentially impacted by a given study or health topic with research teams in order to inform trial design in a meaningful and timely manner. To address this need, we developed an innovative mechanism called the "ResearchMatch Expert Advice Tool" that quickly obtains volunteer perspectives from populations with specific health conditions or lived experiences using the national recruitment registry, ResearchMatch. This tool does not ask volunteers to participate in the trial but allows for wider community feedback to be gathered and translated into actionable recommendations used to inform the study's design. We describe early use cases that shaped the current Expert Advice Tool workflow, how results from this tool were incorporated and implemented by studies, and feedback from volunteers and study teams regarding the tool's usefulness. Additionally, we present a set of lessons learned during the development of the Expert Advice Tool that can be used by other recruitment registries seeking to obtain volunteer feedback on study design and operations.

摘要

让参与者参与临床试验设计应能提高研究的整体成功率。要实现这一点,就需要简化机制,将可能受特定研究或健康主题影响的人群与研究团队联系起来,以便以有意义且及时的方式为试验设计提供信息。为满足这一需求,我们开发了一种名为“ResearchMatch专家建议工具”的创新机制,该机制利用全国性招募登记平台ResearchMatch,快速从患有特定健康状况或有特定生活经历的人群中获取志愿者的观点。此工具并不要求志愿者参与试验,而是允许收集更广泛的社区反馈,并将其转化为可用于为研究设计提供信息的可行建议。我们描述了塑造当前专家建议工具工作流程的早期应用案例、该工具的结果是如何被研究纳入并实施的,以及志愿者和研究团队对该工具实用性的反馈。此外,我们还介绍了在专家建议工具开发过程中吸取的一系列经验教训,其他招募登记平台若想获取志愿者对研究设计和操作的反馈,可借鉴这些经验。

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