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

Peter A. Lee, Anna Nordenström, Christopher P. Houk, S. Faisal Ahmed, Richard Auchus, Arlene Baratz, Katharine Baratz Dalke, Lih Mei Liao, Karen Lin-Su, Leendert H.J. Looijenga, Tom Mazur, Heino F.L. Meyer-Bahlburg, Pierre Mouriquand, Charmian A. Quigley, David E. Sandberg, Eric Vilain, Selma Witchel

Research output: Contribution to journalArticle

166 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)158-180
Number of pages23
JournalHormone Research in Paediatrics
Volume85
Issue number3
DOIs
StatePublished - Apr 1 2016

Fingerprint

Disorders of Sex Development
Quality of Life
Patient-Centered Care
Self-Help Groups
Germ Cell and Embryonal Neoplasms
Disclosure
Germ Cells
Molecular Biology
Anatomy
Consensus
Parents
Communication

All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health
  • Endocrinology, Diabetes and Metabolism
  • Endocrinology

Cite this

Lee, P. A., Nordenström, A., Houk, C. P., Ahmed, S. F., Auchus, R., Baratz, A., ... Witchel, S. (2016). Global disorders of sex development update since 2006: Perceptions, approach and care. Hormone Research in Paediatrics, 85(3), 158-180. https://doi.org/10.1159/000442975
Lee, Peter A. ; Nordenström, Anna ; Houk, Christopher P. ; Ahmed, S. Faisal ; Auchus, Richard ; Baratz, Arlene ; Baratz Dalke, Katharine ; Liao, Lih Mei ; Lin-Su, Karen ; Looijenga, Leendert H.J. ; Mazur, Tom ; Meyer-Bahlburg, Heino F.L. ; Mouriquand, Pierre ; Quigley, Charmian A. ; Sandberg, David E. ; Vilain, Eric ; Witchel, Selma. / Global disorders of sex development update since 2006 : Perceptions, approach and care. In: Hormone Research in Paediatrics. 2016 ; Vol. 85, No. 3. pp. 158-180.
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Lee, PA, Nordenström, A, Houk, CP, Ahmed, SF, Auchus, R, Baratz, A, Baratz Dalke, K, Liao, LM, Lin-Su, K, Looijenga, LHJ, Mazur, T, Meyer-Bahlburg, HFL, Mouriquand, P, Quigley, CA, Sandberg, DE, Vilain, E & Witchel, S 2016, 'Global disorders of sex development update since 2006: Perceptions, approach and care', Hormone Research in Paediatrics, vol. 85, no. 3, pp. 158-180. https://doi.org/10.1159/000442975

Global disorders of sex development update since 2006 : Perceptions, approach and care. / Lee, Peter A.; Nordenström, Anna; Houk, Christopher P.; Ahmed, S. Faisal; Auchus, Richard; Baratz, Arlene; Baratz Dalke, Katharine; Liao, Lih Mei; Lin-Su, Karen; Looijenga, Leendert H.J.; Mazur, Tom; Meyer-Bahlburg, Heino F.L.; Mouriquand, Pierre; Quigley, Charmian A.; Sandberg, David E.; Vilain, Eric; Witchel, Selma.

In: Hormone Research in Paediatrics, Vol. 85, No. 3, 01.04.2016, p. 158-180.

Research output: Contribution to journalArticle

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AU - Lee, Peter A.

AU - Nordenström, Anna

AU - Houk, Christopher P.

AU - Ahmed, S. Faisal

AU - Auchus, Richard

AU - Baratz, Arlene

AU - Baratz Dalke, Katharine

AU - Liao, Lih Mei

AU - Lin-Su, Karen

AU - Looijenga, Leendert H.J.

AU - Mazur, Tom

AU - Meyer-Bahlburg, Heino F.L.

AU - Mouriquand, Pierre

AU - Quigley, Charmian A.

AU - Sandberg, David E.

AU - Vilain, Eric

AU - Witchel, Selma

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N2 - 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.

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