Background: Research and audit are vital for the management of Differences/Disorders of Sex Development (DSD). Clinical networks have a strong potential to drive these activities with the development of care standards including patient experience data and peer-observation of clinical care provision. Summary: Following the 2005 Consensus Workshop that stressed the need for the regular collection and sharing of data across geographical boundaries, the current I-DSD registry was initially launched in 2008. Over a decade later, this registry and its associated network, play an increasingly important role in supporting research, training and benchmarking of care and service. Patient registries can also facilitate the development of local circles of patients and parents with similar conditions who can support each other. Key messages: The case for participating in standardized data collection and exchange for DSD has now been made and should be standard practice in centres that care for people with DSD.


中文翻译：

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I-DSD – 第一个 10 年


背景：研究和审计对于性发育差异/障碍（DSD）的管理至关重要。通过制定护理标准（包括患者体验数据和临床护理提供的同行观察），临床网络具有推动这些活动的强大潜力。摘要：继 2005 年共识研讨会强调定期收集和共享跨地理边界数据的必要性之后，当前的 I-DSD 注册表于 2008 年首次启动。十多年后，该注册表及其相关网络发挥着越来越重要的作用。在支持护理和服务的研究、培训和基准测试方面发挥着重要作用。患者登记还可以促进当地病情相似的患者和家长圈子的发展，他们可以互相支持。关键信息：参与 DSD 标准化数据收集和交换的理由现已提出，并且应该成为护理 DSD 患者的中心的标准做法。