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Category Archives: DSD Research Highlights
“It became easier once I knew”: Stakeholder perspectives for educating children and teenagers about their difference of sex development
Erica M Weidler 1, Kristina I Suorsa-Johnson 2, Alison S Baskin 3, Angela Fagerlin 4, Melissa D Gardner 5, Meilan M Rutter 6, Tara Schafer-Kalkhoff 7, Kathleen van Leeuwen 1, David E Sandberg 8 Affiliations expand Abstract Objective: Secrecy about a child’s difference of sex development (DSD) can lead to internalized shame and stigma. We explored how teenagers and … Continue reading
Creation of an Electronic Resource Repository for Differences of Sex Development (DSD): Collaboration Between Advocates & Clinicians in the DSD-TRN
Meilan M Rutter 1 2 3, Miriam Muscarella 1 4 5, Janet Green 1 4, Gnendy Indig 1 4 6, Alexandra von Klan 1 4 7, Kimberly Kennedy 1 3, Erica M Weidler1 4 8, Margaret Barrett 9, David E Sandberg 1 10, DSD-Translational Research Network PMID: 35636406 DOI: 10.1159/000524629 Abstract Introduction: People with differences of sex development (DSD) and their families need education about these conditions while receiving emotional and peer support … Continue reading
Information Sharing in Differences of Sex Development: The Creation of a Caregiver-Support Tool
AbstractIntroduction: Social support can be a protective factor against the negative mental health outcomes experienced by some parents and caregivers of children with differences of sex development (DSD). However, established social support networks can be difficult to access due to … Continue reading
Future fertility for individuals with differences of sex development: Parent attitudes and perspectives about decision-making
Research article published in an issue of the Journal of Pediatric Urology (https://www.ncbi.nlm.nih.gov/pubmed/28713007). Future fertility for individuals with differences of sex development: Parent attitudes and perspectives about decision-making Authors: Emilie K. Johnson, Ilina Rosoklija, Angela Shurba, Anthony D’Oro, Elisa J. … Continue reading
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Clinical practice guidelines for the care of girls and women with Turner syndrome: Proceedings from the 2016 Cincinnati International Turner Syndrome Meeting
Research article published in an issue of the European Journal of Endocrinology (https://www.ncbi.nlm.nih.gov/pubmed/?term=28705803). Clinical practice guidelines for the care of girls and women with Turner syndrome: Proceedings from the 2016 Cincinnati International Turner Syndrome Meeting Authors: Claus H Gravholt, Niels … Continue reading
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Fertility-Related Care for Gender and Sex Diverse Individuals: A Provider Needs-Assessment Survey
Research article published in an issue of the journal Transgender Health; widely available via PubMed Commons (PMC) (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5549540/). Fertility-Related Care for Gender and Sex Diverse Individuals: A Provider Needs-Assessment Survey Authors: Emilie K. Johnson, Diane Chen, Elisa J. Gordon, Ilina … Continue reading
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Disorders of sex development (DSD): Clinical service delivery in the United States
Research article published in a special issue of the American Journal of Medical Genetics (http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.2/issuetoc). Disorders of sex development (DSD): Clinical service delivery in the United States Authors: Aimee M. Rolston, Melissa Gardner, Kathleen van Leeuwen, Lauren Mohnach, Catherine Keegan, … Continue reading
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Interdisciplinary care in disorders/differences of sex development (DSD): The psychosocial component of the DSD—Translational research network
Research article published in a special issue of the American Journal of Medical Genetics (http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.2/issuetoc). Interdisciplinary care in disorders/differences of sex development (DSD): The psychosocial component of the DSD- Translational research network. Authors: David E. Sandberg, Melissa Gardner, Nina Callens, … Continue reading
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Developing Multidisciplinary Teams
Advocacy Advisory Network member Mary Elizabeth Moran and Katarina Karkazis have recently published an article: “Developing a Multidisciplinary Team for Disorders of Sex Development: Planning, Implementation, and Operation Tools for Care Providers”. In this article, the authors discuss how a multidisciplinary … Continue reading
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