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Assessing Health-Related Quality of Life in Disorders of Sex Development: Phase I – Item Generation

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Hormonal and Genetic Basis of Sexual Differentiation Disorders and Hot Topics in Endocrinology: Proceedings of the 2nd World Conference

Part of the book series: Advances in Experimental Medicine and Biology ((AEMB,volume 707))

Abstract

Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical [1]. Only anecdotal, retrospective reports exist regarding the experiences of children with DSD and their families, with no concurrently collected data on the specific stressors children and families face or on their processes of adaptation.

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References

  1. Lee PA, Houk CP, Ahmed SF, Hughes IA, in collaboration with the participants in the International Consensus Conference on Intersex organized by the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology. Consensus statement on management of intersex disorders. Pediatrics. 2006; 118: e488–e500.

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Acknowledgment

This work was supported by NICHD awards R21HD044398 and R01HD053637.

Author information

Authors and Affiliations

  1. Division of Child and Behavioral Health, Department of Pediatrics & Communicable Diseases, University of Michigan, Ann Arbor, MI, USA

    David E. Sandberg

  2. University of Michigan, Ann Arbor, MI, USA

    Melissa D. Gardner

  3. Albany Medical College, Albany, NY, USA

    Barry A. Kogan

  4. University of Miami, Miami, FL, USA

    Mary Beth Grimley, Laura Cohen, Adrianne N. Alpern & Alexandra L. Quittner

Authors
  1. David E. Sandberg
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  2. Melissa D. Gardner
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  3. Barry A. Kogan
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  4. Mary Beth Grimley
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  5. Laura Cohen
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  6. Adrianne N. Alpern
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  7. Alexandra L. Quittner
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Corresponding author

Correspondence to David E. Sandberg .

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Editors and Affiliations

  1. Mount Sinai School of Medicine, One Gustave L. Levy place box, New York, 10029, USA

    Maria I. New

  2. Florida International University, 11200 S.W. 8th Street, Miami, 33199, Florida, USA

    Joe Leigh Simpson

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© 2011 Springer Science+Business Media, LLC

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Sandberg, D.E. et al. (2011). Assessing Health-Related Quality of Life in Disorders of Sex Development: Phase I – Item Generation. In: New, M., Simpson, J. (eds) Hormonal and Genetic Basis of Sexual Differentiation Disorders and Hot Topics in Endocrinology: Proceedings of the 2nd World Conference. Advances in Experimental Medicine and Biology, vol 707. Springer, New York, NY. https://doi.org/10.1007/978-1-4419-8002-1_31

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