Caring for Individuals with a Difference of Sex Development (DSD): a Consensus Statement

Overview

Journal Nat Rev Endocrinol

Specialty Endocrinology

Date 2018 May 18

PMID 29769693

Citations 104

Authors

Martine Cools

Anna Nordenstrom

Ralitsa Robeva

Joanne Hall

Puck Westerveld

Christa Fluck

Birgit Kohler

Marta Berra

Alexander Springer

Katinka Schweizer

Vickie Pasterski

Affiliations

Soon will be listed here.

Abstract

The term differences of sex development (DSDs; also known as disorders of sex development) refers to a heterogeneous group of congenital conditions affecting human sex determination and differentiation. Several reports highlighting suboptimal physical and psychosexual outcomes in individuals who have a DSD led to a radical revision of nomenclature and management a decade ago. Whereas the resulting recommendations for holistic, multidisciplinary care seem to have been implemented rapidly in specialized paediatric services around the world, adolescents often experience difficulties in finding access to expert adult care and gradually or abruptly cease medical follow-up. Many adults with a DSD have health-related questions that remain unanswered owing to a lack of evidence pertaining to the natural evolution of the various conditions in later life stages. This Consensus Statement, developed by a European multidisciplinary group of experts, including patient representatives, summarizes evidence-based and experience-based recommendations for lifelong care and data collection in individuals with a DSD across ages and highlights clinical research priorities. By doing so, we hope to contribute to improving understanding and management of these conditions by involved medical professionals. In addition, we hope to give impetus to multicentre studies that will shed light on outcomes and comorbidities of DSD conditions across the lifespan.

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