ECEESPE2025 Poster Presentations Reproductive and Developmental Endocrinology (93 abstracts)
Gonadectomy in individuals with differences of sex development – a two year prospective i-dsd registry study
Michele O’Connell 1,2 , Angela Lucas-Herald 3,4 , Jillian Bryce 4 , Minglu Chen 4 , Justin Davies 5 , Margarett Shnorhavorian 6 , Engy Nasr AbdelMoneam 7 , Navoda Attapatu 8 , Inna Bachynska 9 , Niels Birkebaek 10 , Claudia Boettcher 11 , Martine Cools 12 , Korcan Demir 13 , Liat de Vries 14,15 , Heba Elsedfy 16 , Mohamed Fahmy 17 , Aneta Gawlik-Starzyk 18 , Eugenia Globa 19 , Romina P. Grinspon 20 , Guilherme Guaragna-Filho 21 , Gil Guerra-Junior 22 , Dominika Janus 23 , Zofia Kolesinska , Inas Mazen 24 , Susan M O’Connell 25,26 , Sumudu Seneviratne 27 , Marianna Rita Stancampiano 28 , Gilvydas Verkauskas 29 , Kay Winner 30 & Faisal Ahmed 3,4
1The Royal Children’s Hospital and Murdoch Children’s Research Institute, Melbourne, Australia; 2The University of Melbourne, Melbourne, Australia; 3University of Glasgow, Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, Glasgow, United Kingdom; 4Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, United Kingdom; 5University Hospital Southampton, Department of Paediatric Endocrinology, Southampton, United Kingdom; 6Seattle Children’s Hospital, Division of Urology, Seattle, United States; 7Cairo University Children Hospital Aboulrish, Pediatrics, Cairo, Egypt; 8Lady Ridgeway Hospital, Colombo, Sri Lanka; 9National Children’s Hospital "OHMATDYT", Kyiv, Ukraine; 10Aarhus University Hospital, Department of Pediatrics, Aarhus, Denmark; 11University Children’s Hospital, Julie-von-Jenner-House, Paediatric Endocrinology, Diabetology and Metabolics, Bern, Switzerland; 12Ghent University Hospital, Ghent University, Ghent, Belgium; 13Dokuz Eylül University, Division of Pediatric Endocrinology, Izmir, Türkiye; 14Schneider Children’s Medical Center, Petah Tiqvah, Israel; 15Tel Aviv University, School of Medicine, Tel Aviv, Israel; 16Ain Shams University, Cairo, Egypt; 17Al-Azhar University, Cairo, Egypt; 18Faculty of Medical Sciences, Medical University of Silesia, Department of Pediatrics and Pediatric Endocrinology, Katowice, Poland; 19Ukrainian Research Center of Endocrine Surgery, Endocrine Organs and Tissue Transplantation, MoH Ukraine, Kyiv, Ukraine; 20"Dr. César Bergadá" (CEDIE), CONICET-FEI-División de Endocrinología, Hospital de Niños Ricardo Gutiérrez, Buenos Aires, Argentina; 21Universidade Federal do Rio Grande do Sul (UFRGS), Porto Alegre, Brazil; 22Faculty of Medical Sciences, University of Campinas, Campinas, Brazil; 23University Children’s Hospital, Jagiellonian University, Department of Paediatric and Adolescent Endocrinology, Krakow, Poland; 24National Research Center, Cairo, Egypt; 25Children’s Health Ireland at Crumlin, Dublin, Ireland; 26Royal College of Surgeons of Ireland, Dublin, Ireland; 27Faculty of Medicine, University of Colombo, Colombo, Sri Lanka; 28IRCCS San Raffaele Scientific Institute, Dept of Pediatrics, Milan, Italy; 29Vilnius University Hospital, Vilnius, Lithuania; 30University Medical Centre, Ulm, Germany
JOINT2827
Introduction: The appropriateness of gonadectomy in people with differences of sex development (DSD) is increasingly contested yet reports of contemporary practices are lacking. This study aimed to determine the frequency of gonadectomy and associated care pathways in individuals with DSD internationally.
Methods: A 2-year prospective study was undertaken through the I-DSD Registry (Dec 2022-Dec 2024). Participating centres reported gonadectomies undertaken in individuals with DSD in response to a monthly automated email survey. Where an individual had given informed consent for inclusion in the I-DSD Registry, a secondary survey captured additional clinical information.
Results: Over the 2-year study period, 30/74 (41%) centres reported no gonadectomy, while 173 individuals from 44 centres had gonads removed; median (range) / centre: 1 (0,18). Secondary survey data are available for 82/174 (47%) cases to date; 80% were female. Median (range) age at gonadectomy was 11.7 (0.1,20.0) years. All had specialist multidisciplinary team involvement prior to gonadectomy: endocrinology (98%), genetics (82%) and psychology (67%) were most frequent. Differences of gonadal development (36/82 [44%]) and chromosomal DSD (including Turner syndrome, 24/82 [29%]) were the most frequent underlying diagnoses. Gonads were intra-abdominal in 65/82 (79%). Pre-gonadectomy investigations included: hormonal testing (77/82 [94%]), imaging (73/82 [89%], direct laparoscopic visualisation (29/82 [35%]) and gonadal biopsy (17/82 [21%]). Bilateral gonadectomy was undertaken in 57/82 (70%). Mitigation of future malignancy risk in the context of gonadal insufficiency was the most common primary indication for gonadectomy (55/82 [67%]). Concerning clinical (3/82 [4%]) changes and/or imaging or biopsy findings (8/82 [10%]) were uncommon. Histopathology confirmed neoplastic change in 24/82 (29%) individuals: age range 0.8- 17.0 years. Nine (11%) had precursor lesions alone; 15/82 (18%) had gonadal tumours, of whom 3 had precursor lesions also present. Two individuals had evidence of extra-gonadal metastases. Surveillance imaging pre gonadectomy raised no suspicion for gonadal neoplasm in 18/23 (78%).
Conclusions: This prospective I-DSD surveillance study offers important contemporary insights into the practice of gonadectomy in individuals with DSD internationally. Overall gonadectomy appears relatively infrequent. Multidisciplinary care provision prior to gonadectomy is standard; however, our data confirm variation in care pathways and significant challenges for decision-making regarding gonadal management. The limitations of imaging for reliable gonadal surveillance and the presence of gonadal neoplasms in young children demonstrated here must be measured alongside considerations to defer gonadectomy to prioritise personal autonomy. These findings should inform future shared decision-making resources and clinical care for gonadal management in individuals with DSD.
Volume 110
Article tools
My recent searches
My recently viewed abstracts
Authors
Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
© Bioscientifica 2025 |
Privacy policy |
Cookie settings
BiosciAbstracts
Bioscientifica Abstracts is the gateway to a series of products that provide a permanent, citable record of abstracts for biomedical and life science conferences.
Find out more