Impact of the consensus statement and the new DSD classification system

In 2006, a task force of 50 specialists sponsored by the European Society for Paediatric Endocrinology (ESPE) and the Lawson Wilkins Pediatric Endocrine Society (LWPES) devised a Consensus Statement outlining the recommendations for the management of disorders of sex development (DSDs; then referred to as ‘intersex’ disorders) as well as proposing a new nomenclature and DSD classification system. In the 2 years subsequent to its publication, the Statement has been widely cited and endorsed in the literature as a model for patient care. In addition, much of the scientific literature incorporates the newly proposed nomenclature and classification system as part of its own discourse. However, without a systematic analysis of the uptake of recommendations of the Statement, it is not possible to make valid conclusions regarding the uptake of the recommendations within clinical practice. Here we discuss the Consensus Statement and its impact with respect to the newly proposed nomenclature and psychosocial management according to a new study following 60 DSD centres throughout Europe. Finally, we discuss future directions for research in the management of DSD, beginning at the moment of disclosure.

Keywords: disorders of sex development, DSD, gender assignment, intersex, psychosocial management