跨性别和非二进制手术注册表:为生殖器性别确认手术建立一个以患者为中心的注册表
Geolani W Dy1,2, Gaines Blasdel3, Daniel Dugi1,2
1Department of Urology, Oregon Health and Science University, Portland, Oregon, USA.
Transgender health
|October 25, 2024
概括
跨性别和非二进制手术 (TRANS) 登记册收集了生殖器性别确认手术 (GGAS) 的长期结果. 这个社区参与的,基于电子健康记录的注册表旨在改善跨性别和非二进制个体的数据质量.
科学领域:
- 医学研究 医学研究
- 外科手术的结果
- 医疗信息学 医疗信息学
背景情况:
- 关于生殖器性别确认手术 (GGAS) 的长期临床和患者报告结果 (PROs) 的高质量数据有限.
- 从历史上看,跨性别和非二进制 (TGNB) 社区的声音一直被排除在研究开发之外,限制了当前研究对利益相关者的实用性.
- 这些数据缺口阻碍了患者,临床医生,纳税人和其他GGAS利益相关者的知情决策.
研究的目的:
- 为了解决在生殖器性别确认手术 (GGAS) 中缺乏全面的结果数据的问题.
- 建立跨性别和非二进制手术 (TRANS) 登记册,以满足GGAS利益相关者的需求.
- 将TGNB社区的声音和观点纳入研究开发过程.
主要方法:
- 从2019年5月到现在,TRANS注册表经过了几个阶段的开发.
- 利益相关者参与是不可或缺的,包括确定关键的临床结果和PROs.
- 在电子健康记录 (EHR) 中创建和实施数据收集工具,并开发集中注册基础设施.
主要成果:
- 特朗斯注册表 (TRANS Registry) 是对接受阴道整形和阴道整形的人进行前性观察注册表.
- 其支持电子健康记录的基础设施有助于患者和临床医生提供纵向结果数据.
- 该研究概述了在设计注册表时使用的社区参与方法,包括经验教训,挑战和未来方向.
结论:
- 该TRANS注册表是第一个多中心倡议,以前性跟踪阴道整形和阴道整形患者的健康结果.
- 它使用支持EHR的方法,并积极吸引TGNB社区成员和临床医生作为合作伙伴.
- 这种注册表开发模型可以应用于其他需要高质量的纵向结果数据的新兴领域.
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