Consensus statement on management of intersex disorders

Ieuan A Hughes ^1*, Chris Houk ², S Faisal Ahmed ³ and Peter A Lee ²

¹ University of Cambridge, United Kingdom
² Penn State College of Medicine, United States
³ Royal Hospital for Sick Children, United Kingdom

^* To whom correspondence should be addressed. E-mail: iah1000{at}cam.ac.uk.

Accepted 31 March 2006

Abstract

The birth of an intersex child prompts a long-term management strategy that involves a myriad of professionals working with the family. It is estimated that genital anomalies occur in 1 in 4500 births. There has been progress in diagnosis, surgical techniques, understanding psychosocial issues and in recognising and accepting the place of patient advocacy. The Lawson Wilkins Pediatric Endocrine Society (LWPES) and the European Society for Paediatric Endocrinology (ESPE) considered it timely to review the management of intersex disorders from a broad perspective, to review data on longer term outcome and to formulate proposals for future studies. The methodology comprised establishing a number of working groups whose membership was drawn from 50 international experts in the field. The groups prepared prior written responses to a defined set of questions resulting from an evidence based review of the literature. At a subsequent gathering of participants, a framework for a consensus document was agreed. This paper constitutes its final form.

Keywords: disorders of sex development, gonads, intersex, psychosexual, surgery

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