Consensus statement on management of intersex disorders

Hughes, I.A.; Houk, C.; Ahmed, S.F.; Lee, P.A.; Lawson Wilkins Pediatric Endocrine Society (LWPES)/European Society for Paediatric Endocrinology (ESPE) Consensus Group,

doi:10.1016/j.jpurol.2006.03.004

« Previous Next »Journal of Pediatric Urology
Volume 2, Issue 3 , Pages 148-162, June 2006

Consensus statement on management of intersex disorders

I.A. Hughes
- Department of Paediatrics, University of Cambridge, Addenbrooke's Hospital, Cambridge CB2 2QQ, UK
- Corresponding author. Department of Paediatrics, University of Cambridge, Addenbrooke's Hospital, Box 116, Level 8, Hills Road, Cambridge CB2 2QQ, UK. Tel.: +44 (0) 1223 336885; fax: +44 (0) 1223 336996.
C. Houk
- Department of Pediatrics, Penn State College of Medicine, Hershey, PA, USA
S.F. Ahmed
- Department of Child Health, Royal Hospital for Sick Children, Glasgow, UK
P.A. Lee
- Department of Pediatrics, Penn State College of Medicine, Hershey, PA, USA
Lawson Wilkins Pediatric Endocrine Society (LWPES)/European Society for Paediatric Endocrinology (ESPE) Consensus Group
- Consensus Group: The following participants contributed to the production of the Consensus document: John Achermann (London, UK), Faisal Ahmed (Glasgow, UK), Laurence Baskin (San Francisco, USA), Sheri Berenbaum (University Park, USA), Sylvano Bertelloni (Pisa, Italy), John Brock (Nashville, USA), Polly Carmichael (London, UK), Cheryl Chase (Rohnert Park, USA), Peggy Cohen-Kettenis (Amsterdam, Netherlands), Felix Conte (San Francisco, USA), Patricia Donohoue (Iowa City, USA), Chris Driver (Aberdeen, UK), Stenvert Drop (Rotterdam, Netherlands), Erica Eugster (Indianapolis, USA), Kenji Fujieda (Asahikawa, Japan), Jay Giedd (Bethesda, USA), Richard Green (London, UK), Melvin Grumbach (San Francisco, USA), Vincent Harley (Victoria, Australia), Melissa Hines (London, UK), Olaf Hiort (Lübeck, Germany), Ieuan Hughes (Cambridge, UK), Peter Lee (Hershey, USA), Leendert Looijenga (Rotterdam, Netherlands), Laurence McCullough (Houston, USA), Bernadice Mendoca (Sao Paulo, Brazil), Heino Meyer-Bahlburg (New York, USA), Claude Migeon (Baltimore, USA), Yves Morel (Lyon, France), Pierre Mouriquand (Lyon, France), Anna Nordenström (Stockholm, Sweden), Phillip Ransley (London, UK), Robert Rapaport (New York, USA), William Reiner (Oklahoma City, USA), Hertha Richter-Appelt (Hamburg, Germany), Richard Rink (Indianapolis, USA), Emilie Rissman (Charlottesville, USA), Paul Saenger (New York, USA), David Sandberg (Buffalo, USA), Justine Schober (Erie, USA), Norman Spack (Boston, USA), Barbara Thomas (Rottenburg am Neckar, Germany), Ute Thyen (Lübeck, Germany), Eric Vilain (Los Angeles, USA), Garry Warne (Melbourne, Australia), Amy Wisniewski (Des Moines, USA), Jean Wilson (Dallas, USA), Christopher Woodhouse (London, UK), Kenneth Zucker (Toronto, Canada).

published online 26 May 2006.

Abstract

The birth of an intersex child prompts a long-term management strategy that involves a myriad of professionals working with the family. There has been progress in diagnosis, surgical techniques, understanding psychosocial issues and in recognizing and accepting the place of patient advocacy. The Lawson Wilkins Paediatric 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: Intersex, Consensus, Nomenclature, Diagnosis, Management, Outcome