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Updated: Mar 14, 2026

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Creation and Maintenance of a Living Biobank - How We Do It
Published on: April 10, 2021
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与活体捐赠者合作,开发长期随访数据收集工具
Allyson Hart1,2,3, Katie Siegert1,2, Heather Hunt4
1Scientific Registry of Transplant Recipients, Minneapolis, MN, USA.
概括
活体捐赠者确定了或肝脏捐赠后长期结果的关键数据. 这确保了以患者为中心的研究将重点放在对捐赠者来说最重要的事情上.
科学领域:
- 移植医学 移植医学
- 患者为中心的研究结果研究.
背景情况:
- 对于活着的和肝脏捐赠者的长期结果还不清楚.
- 以患者为中心的结果对于改善捐赠者的知识和咨询至关重要.
研究的目的:
- 根据活体捐赠者的输入,优先考虑长期收集和报告的数据元素.
- 确保活体捐赠者和候选人推动以患者为中心的数据收集工作.
主要方法:
- 在移植受体科学注册的活体捐赠者指导委员会活体捐赠者参与.
- 进行了头脑风暴和优先级练习,以确定关键数据元素.
主要成果:
- 确定了关键的长期结果:长期实验室值,日常活动困难和慢性/肝病诊断.
- 高优先级的因素包括短期实验室,与捐赠有关的死亡,捐赠者死亡率与非捐赠者,再接收,成本,身体限制和捐赠者重新捐赠的意愿.
- 与非捐赠者相比,捐赠者希望了解器官衰竭风险.
结论:
- 活体捐赠者的投入对于定义有意义的长期结果措施至关重要.
- 优先考虑的数据元素将加强对活体捐赠者和候选者的长期跟踪和报告.
- 这种方法确保了研究与捐赠者的优先事项保持一致,并改善了活体捐赠的体验.
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