University of Michigan Disorders of Sex Development (DSD) Research and Quality Improvement Symposium
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Disorders of sex development (DSD) are “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical” . For families, the birth of a child with a DSD, and the attendant uncertainty about the child’s gender and future psychological and sexual development, is believed to be extraordinarily stressful. For health-care professionals, genital ambiguity and discordance among genotype, gonads, and anatomy can be the most challenging aspects of an already complex medical condition for which long-standing controversy over the most appropriate model of care exists .
KeywordsGender Identity Collaborative Learning Turner Syndrome Affected Person Complete Androgen Insensitivity Syndrome
The authors gratefully acknowledge Sharon Benjamin, PhD, Principal, Alchemy; Susan Salem-Schatz, ScD, Principal, HealthCare Quality Initiatives; and Ilene Rosin, MPH, President, Ilene Rosin, Inc. for their roles in conference design and facilitation. We also thank the following content experts who delivered the Conversation Café talks: Tom Mazur, PsyD, University at Buffalo and Women and Children’s Hospital of Buffalo; Anne Tamar-Mattis, JD, Executive Director, Advocates for Informed Choice (AIC); Helen Sharp, PhD CCC-SLP, Department of Speech Pathology & Audiology, Western Michigan University; and Laura A. Siminoff, PhD, Professor and Chair, Department of Social and Behavioral Health, School of Medicine, Virginia Commonwealth University. We also thank Carol Andreae-Nickles, Events & Public Relations Coordinator, Department of Pediatrics & Communicable Diseases, and Accord Alliance for providing conference logistics support. The DSD Research and Quality Improvement Symposium was supported by a symposium grant from the University of Michigan Office of the Vice President for Research, Initiative on Rare Disease, grants from the University of Michigan Departments of Pediatrics & Communicable Diseases, Surgery and Urology, and the Michigan Department of Community Health.
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