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“将遗体捐赠给科学”:特纳综合征中关于尸检和器官捐献的讨论。

"Donating our bodies to science": A discussion about autopsy and organ donation in Turner syndrome.

机构信息

Department of Internal Medicine, McGovern Medical School, University of Texas Health Science Center at Houston, Houston, Texas.

Department of Biology, Whitehead Institute, Cambridge, Massachusetts.

出版信息

Am J Med Genet C Semin Med Genet. 2019 Mar;181(1):36-42. doi: 10.1002/ajmg.c.31671. Epub 2019 Jan 11.

Abstract

At the Third Turner Resource Network Symposium, a working group presented the results of collaborative discussions about the importance of autopsy in Turner syndrome (TS). Considerable gaps in understanding the causes of death in TS can only be closed by more frequent death investigations and autopsies. The presentation included an overview of autopsy methods, strategies for utilizing autopsy, and biobanking to address research questions about TS, and the role of palliative care in the context of autopsy. This review highlights strategies to promote autopsy and tissue donation, culminating with an action plan to increase autopsy rates in the TS community.

摘要

在第三届特纳资源网络研讨会上,一个工作组介绍了关于特纳综合征 (TS) 尸检重要性的合作讨论结果。只有通过更频繁的死亡调查和尸检,才能弥合对 TS 死因理解上的巨大差距。该报告包括对尸检方法、利用尸检的策略以及生物库的概述,以解决有关 TS 的研究问题,以及姑息治疗在尸检中的作用。本综述强调了促进尸检和组织捐赠的策略,最终制定了一项行动计划,以提高 TS 社区的尸检率。

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