I-DSD: The First 10 Years

Abstract

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.

Keywords: CAH; DSD; Network; Rare disease; Registry.