Caring for individuals with a difference of sex development (DSD): a Consensus Statement

Nature Reviews. Endocrinology
Martine CoolsCOST Action BM1303 working group 1

Abstract

The term differences of sex development (DSDs; also known as disorders of sex development) refers to a heterogeneous group of congenital conditions affecting human sex determination and differentiation. Several reports highlighting suboptimal physical and psychosexual outcomes in individuals who have a DSD led to a radical revision of nomenclature and management a decade ago. Whereas the resulting recommendations for holistic, multidisciplinary care seem to have been implemented rapidly in specialized paediatric services around the world, adolescents often experience difficulties in finding access to expert adult care and gradually or abruptly cease medical follow-up. Many adults with a DSD have health-related questions that remain unanswered owing to a lack of evidence pertaining to the natural evolution of the various conditions in later life stages. This Consensus Statement, developed by a European multidisciplinary group of experts, including patient representatives, summarizes evidence-based and experience-based recommendations for lifelong care and data collection in individuals with a DSD across ages and highlights clinical research priorities. By doing so, we hope to contribute to improving understanding and management ...Continue Reading

References

Dec 13, 1997·Pediatric Research·I FrancoisD Vanderschueren
Jan 5, 2000·BJU International·S F AhmedI A Hughes
Mar 2, 2002·Fertility and Sterility·Cristina L Benetti-PintoJoão F Marques-Neto
Apr 5, 2002·The Journal of Clinical Endocrinology and Metabolism·John C AchermannJ Larry Jameson
Mar 12, 2003·The Journal of Clinical Endocrinology and Metabolism·Sheri A Berenbaum, J Michael Bailey
Apr 22, 2005·BJOG : an International Journal of Obstetrics and Gynaecology·Jillian LloydSarah M Creighton
Jul 13, 2005·Archives of Sexual Behavior·Arianne B DessensStenvert L S Drop
May 26, 2006·Orphanet Journal of Rare Diseases·Richard Gibbons
Jun 1, 2006·The Journal of Clinical Endocrinology and Metabolism·Vivian SobelJulianne Imperato-McGinley
Aug 12, 2006·Archives of Sexual Behavior·Heino F L Meyer-BahlburgMaria I New
Aug 24, 2006·Pediatric Nephrology : Journal of the International Pediatric Nephrology Association·Patrick Niaudet, Marie-Claire Gubler
Aug 25, 2006·Nature Clinical Practice. Endocrinology & Metabolism·Claus H Gravholt
Oct 19, 2006·The Journal of Clinical Endocrinology and Metabolism·Carolyn A Bondy, UNKNOWN Turner Syndrome Study Group
Mar 16, 2007·Orphanet Journal of Rare Diseases·Karine MorcelDaniel Guerrier
Apr 7, 2007·Nature Clinical Practice. Urology·Anders Bojesen, Claus H Gravholt
Oct 19, 2007·Archives of Sexual Behavior·Karsten SchützmannHertha Richter-Appelt
Dec 19, 2007·Human Mutation·Sara TomaselliPaola Grammatico
Jan 27, 2009·Neuromuscular Disorders : NMD·Jonathan BaetsPeter De Jonghe
Jan 27, 2009·Arquivos brasileiros de endocrinologia e metabologia·Juliana Gabriel R de AndradeAndréa Trevas Maciel-Guerra
Sep 16, 2009·Sexual Development : Genetics, Molecular Biology, Evolution, Endocrinology, Embryology, and Pathology of Sex Determination and Differentiation·E DatiS Bertelloni
Jan 19, 2010·Maturitas·Marta BerraGerard S Conway
May 27, 2010·Sexual Development : Genetics, Molecular Biology, Evolution, Endocrinology, Embryology, and Pathology of Sex Determination and Differentiation·S F AhmedR O Sinnott
Jun 15, 2010·Best Practice & Research. Clinical Endocrinology & Metabolism·Leendert H J LooijengaKatja P Wolffenbuttel
Jun 16, 2010·Archives of Disease in Childhood. Fetal and Neonatal Edition·Harriet L MilesIeuan A Hughes
Jul 29, 2010·Sexual Development : Genetics, Molecular Biology, Evolution, Endocrinology, Embryology, and Pathology of Sex Determination and Differentiation·R DeansS M Creighton
Aug 18, 2010·Hormone Research in Pædiatrics·Lynn H GillamGarry L Warne
Aug 20, 2010·Journal of Pediatric Urology·Lih-Mei LiaoSarah M Creighton
Aug 20, 2010·The Journal of Clinical Endocrinology and Metabolism·Wiebke ArltUNKNOWN United Kingdom Congenital Adrenal Hyperplasia Adult Study Executive (CaHASE)
Sep 8, 2010·Sexual Development : Genetics, Molecular Biology, Evolution, Endocrinology, Embryology, and Pathology of Sex Determination and Differentiation·S BertelloniS Mora
Sep 9, 2010·The Journal of Clinical Endocrinology and Metabolism·Phyllis W SpeiserUNKNOWN Endocrine Society
Nov 6, 2010·Endocrine Reviews·Walter L Miller, Richard J Auchus
Jan 5, 2011·Fertility and Sterility·Ivan TulicJelena Micic
Jan 12, 2011·Proceedings of the National Academy of Sciences of the United States of America·Diana LourençoAnu Bashamboo
Mar 8, 2011·Journal of Pediatric Surgery·Alexander SpringerErnst Horcher
Mar 29, 2011·Annual Review of Neuroscience·Melissa Hines
Apr 19, 2011·Fertility and Sterility·Eunice Marumudi, Ariachery C Ammini

❮ Previous
Next ❯

Citations

Sep 9, 2018·Journal of Bioethical Inquiry·Limor Meoded Danon
Jun 28, 2019·Current Opinion in Pediatrics·Amy B Wisniewski, Amy C Tishelman
Apr 24, 2019·Endocrine Practice : Official Journal of the American College of Endocrinology and the American Association of Clinical Endocrinologists·Ryan A HekschLeena Nahata
Oct 31, 2019·The Journal of Clinical Endocrinology and Metabolism·Saskia van der StraatenMartine Cools
Dec 23, 2019·Sexual Development : Genetics, Molecular Biology, Evolution, Endocrinology, Embryology, and Pathology of Sex Determination and Differentiation·Tina L LeunbachS Faisal Ahmed
Jun 10, 2020·Gynecological Endocrinology : the Official Journal of the International Society of Gynecological Endocrinology·Wenqing YangYan Tian
Jun 24, 2020·The Journal of Clinical Endocrinology and Metabolism·Margit Bistrup FischerAnders Juul
Sep 24, 2020·The New England Journal of Medicine·Deborah P Merke, Richard J Auchus
Dec 5, 2018·Frontiers in Pediatrics·Melissa Gardner, David E Sandberg
Nov 21, 2019·Journal of the Endocrine Society·Federica BuonocoreJohn C Achermann
Mar 12, 2020·International Journal of Molecular Sciences·Núria CamatsLaura Audí
Apr 30, 2020·The Application of Clinical Genetics·Rafael Loch Batista, Berenice Bilharinho Mendonca
Aug 14, 2019·Nature Reviews. Endocrinology·Olaf HiortUNKNOWN COST Actions DSDnet and GnRH Network as well as the European Reference Network for Rare Endocrine Conditions (Endo–ERN)
Feb 23, 2020·International Journal of Pediatric Endocrinology·Salma R AliS Faisal Ahmed
May 1, 2020·Frontiers in Endocrinology·Romina P GrinsponRodolfo A Rey
Dec 24, 2018·Nutrients·Dolores CorellaJose M Ordovas
Apr 23, 2020·Frontiers in Endocrinology·Carla Bizzarri, Marco Cappa
Jan 29, 2019·Frontiers in Pediatrics·Tatiana Prade HemesathEduardo Corrêa Costa
Aug 1, 2019·Endocrine Reviews·Amy B WisniewskiBerenice B Mendonca
Jan 7, 2020·Annals of Pediatric Endocrinology & Metabolism·Yoon Myung KimJin-Ho Choi
Nov 8, 2020·Journal of Clinical Medicine·Pedro Acién, Maribel Acién
Dec 15, 2020·Journal of Pediatric Psychology·Jennifer A Hansen-MooreCanice E Crerand
Dec 4, 2020·International Journal of Molecular Sciences·Laura AudíChrista E Flück
Nov 3, 2020·American Journal of Men's Health·Akiyoshi OsakaKazutaka Saito
Nov 29, 2020·Revista colombiana de obstetricia y ginecología·Álvaro López Soto
Jan 31, 2021·International Journal of Molecular Sciences·Nina TyutyushevaSilvano Bertelloni
Oct 26, 2020·Andrologia·Feyzollah Hashemi-GorjiVahid Reza Yassaee
Feb 10, 2021·Deutsches Ärzteblatt International·Gesine MeyerJörg Bojunga
Nov 29, 2020·Journal of Pediatric and Adolescent Gynecology·Lise DuranteauUNKNOWN dsd-LIFE group
Mar 26, 2021·The Journal of International Medical Research·Yang ZhouShulan Lv
Apr 4, 2021·International Journal of Molecular Sciences·Francesca CioppiCsilla Krausz
May 11, 2021·Frontiers in Pediatrics·Silvano BertelloniDiego G Peroni
Jun 5, 2021·Nature Reviews. Genetics·Emmanuèle C Délot, Eric Vilain

❮ Previous
Next ❯

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BETA
hormone replacement therapy
biopsies
X-ray

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