Caring for individuals with a difference of sex development (DSD): a Consensus Statement.

Cools M; Nordenström A; Robeva R; Hall J; Westerveld P; Flück C; Köhler B; Berra M; Springer A; Schweizer K; Pasterski V

doi:10.1038/s41574-018-0010-8

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Journal article

Caring for individuals with a difference of sex development (DSD): a Consensus Statement.

Cools M Department of Paediatric Endocrinology, Ghent University Hospital, University of Ghent, Ghent, Belgium. martine.cools@ugent.be.
Nordenström A Department of Women's and Children's Health, Paediatric Endocrinology Unit, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
Robeva R Clinical Center of Endocrinology and Gerontology, Medical University-Sofia, Medical Faculty, Sofia, Bulgaria.
Hall J CAH support group, Chester, UK.
Westerveld P DSDNederland, Amsterdam, Netherlands.
Flück C Paediatric Endocrinology and Diabetology, Department of Paediatrics and Department of Clinical Research, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
Köhler B Department of Paediatric Endocrinology, Charité University Medicine, Humboldt University Berlin, Berlin, Germany.
Berra M Department of Obstetrics and Gynaecology, Ramazzini Hospital, AUSL Modena, Modena, Italy.
Springer A Department of Paediatric Surgery, Medical University Vienna, Vienna, Austria.
Schweizer K Institute for Sex Research and Forensic Psychiatry, University Clinic Hamburg-Eppendorf, Hamburg, Germany.
Pasterski V Department of Psychology, University of Cambridge, Cambridge, UK.

2018-05-18

Published in:

Nature reviews. Endocrinology. - 2018

Interdisciplinary Communication

English 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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