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《芝加哥性发育差异共识的影响:个人观点》

Consequences of the Chicago DSD Consensus: A Personal Perspective.

作者信息

Hughes I A

机构信息

University of Cambridge, Cambridge, UK.

出版信息

Horm Metab Res. 2015 May;47(5):394-400. doi: 10.1055/s-0035-1545274. Epub 2015 Mar 6.

DOI:10.1055/s-0035-1545274
PMID:25750076
Abstract

A decade has passed since the Chicago Consensus meeting was convened to consider how to improve the management of individuals and their families with an intersex disorder. It is apposite to review, from an individual perspective, what impact the Consensus has had on clinical practice and research. Emphasis is placed on nomenclature and DSD classification, multidisciplinary team working, striving to reach a causative diagnosis for DSD, the value of uniformity of collective case registries for rare conditions, and the potential for meaningful clinical outcome studies and basic scientific research. The impact of the Consensus can be gauged objectively by an exponential increase in DSD-related publications in the medical and scientific literature and organisation of numerous national and international meetings. Psychologists and social scientists have embraced the subject area and enhanced the holistic approach to management of DSD. Much needs to be done to improve diagnosis, and to identify measures to predict outcome that can be used both in sex assignment decision-making and to improve the quality of life for young adults with DSD. Though challenging, these goals are attainable through specialist multidisciplinary clinics working at local level and the DSD community at large, collaborating at national and international levels to tap the data resources now being developed.

摘要

自芝加哥共识会议召开至今已过去十年,该会议旨在探讨如何改善对患有间性障碍的个体及其家庭的管理。从个体角度回顾该共识对临床实践和研究产生了何种影响是恰当的。重点在于命名法和性发育障碍(DSD)分类、多学科团队协作、努力对DSD做出病因诊断、罕见病集体病例登记统一标准的价值,以及有意义的临床结局研究和基础科学研究的潜力。通过医学和科学文献中与DSD相关出版物的指数级增长以及众多国家和国际会议的组织,可以客观地衡量该共识的影响。心理学家和社会科学家已涉足该领域,并加强了对DSD管理的整体方法。在改善诊断以及确定可用于性别指定决策和提高患有DSD的年轻人生活质量的预测结果措施方面,仍有许多工作要做。尽管具有挑战性,但通过地方层面的专科多学科诊所和广大DSD群体在国家和国际层面开展合作以利用目前正在开发的数据资源,这些目标是可以实现的。

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