Global disorders of sex development update since 2006: perceptions, approach and care

Lee, Peter A., Nordenstrom, Anna, Houk, Christopher P., Ahmed, S. Faisal, Auchus, Richard, Baratz, Arlene, Dalke, Katharine Baratz, Liao, Lih-Mei, Lin-Su, Karen, Looijenga, Leendert H. J., III, Mazur, Tom, Meyer-Bahlburg, Heino F. L., Mouriquand, Pierre, Quigley, Charmian A., Sandberg, David E., Vilain, Eric, Witchel, Selma, Global DSD Update Consortium and Koopman, Peter (2016) Global disorders of sex development update since 2006: perceptions, approach and care. Hormone Research in Paediatrics, 85 3: 158-180. doi:10.1159/000442975

Author Lee, Peter A.
Nordenstrom, Anna
Houk, Christopher P.
Ahmed, S. Faisal
Auchus, Richard
Baratz, Arlene
Dalke, Katharine Baratz
Liao, Lih-Mei
Lin-Su, Karen
Looijenga, Leendert H. J., III
Mazur, Tom
Meyer-Bahlburg, Heino F. L.
Mouriquand, Pierre
Quigley, Charmian A.
Sandberg, David E.
Vilain, Eric
Witchel, Selma
Global DSD Update Consortium
Koopman, Peter
Title Global disorders of sex development update since 2006: perceptions, approach and care
Journal name Hormone Research in Paediatrics   Check publisher's open access policy
ISSN 1663-2818
Publication date 2016-04-01
Year available 2016
Sub-type Article (original research)
DOI 10.1159/000442975
Open Access Status Not yet assessed
Volume 85
Issue 3
Start page 158
End page 180
Total pages 23
Place of publication Basel, Switzerland
Publisher S. Karger AG
Language eng
Formatted abstract
The goal of this update regarding the diagnosis and care of persons with disorders of sex development (DSDs) is to address changes in the clinical approach since the 2005 Consensus Conference, since knowledge and viewpoints change. An effort was made to include representatives from a broad perspective including support and advocacy groups. The goal of patient care is focused upon the best possible quality of life (QoL). The field of DSD is continuously developing. An update on the clinical evaluation of infants and older individuals with ambiguous genitalia including perceptions regarding male or female assignment is discussed. Topics include biochemical and genetic assessment, the risk of germ cell tumor development, approaches to psychosocial and psychosexual well-being and an update on support groups. Open and on-going communication with patients and parents must involve full disclosure, with the recognition that, while DSD conditions are life-long, enhancement of the best possible outcome improves QoL. The evolution of diagnosis and care continues, while it is still impossible to predict gender development in an individual case with certainty. Such decisions and decisions regarding surgery during infancy that alters external genital anatomy or removes germ cells continue to carry risk.
Keyword Disorders of sex development
Ambiguous genitalia
Congenital adrenal-hyperplasia
Androgen insensitivity syndrome
Anti-mullerian hormone
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status Non-UQ

Document type: Journal Article
Sub-type: Article (original research)
Collections: HERDC Pre-Audit
Institute for Molecular Bioscience - Publications
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Citation counts: TR Web of Science Citation Count  Cited 30 times in Thomson Reuters Web of Science Article | Citations
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