SFEBES2023 Poster Presentations Reproductive Endocrinology (42 abstracts)
Gonadectomy in people with a difference of sex development: Initial data from an I-DSD registry prospective quality improvement study
Angela Lucas-Herald 1 , Jillian Bryce 1 , Justin H Davies 2 , Margarett Shnorhavorian 3 , Korcan Demir 4 , Liat de Vries 5 , Heba Elsfedy 6 , Evgenia Globa 7 , Romina Grinspon 8 , Gil Guerra-Junior 9 , Dominika Janus 10 , S Faisal Ahmed 1 & Michele O’Connell 11
1University of Glasgow, Glasgow, United Kingdom. 2University Hospital Southampton, Southampton, United Kingdom. 3Seattle Children’s Hospital, Seattle, USA. 4Dokuz Eylül University, Izmir, Turkey. 5Schneider’s Children Medical Center, Petah Tikvah, Israel. 6Ains-Shams University, Cairo, Egypt. 7Ukrainian Scientific and Practical Center of Endocrine Surgery, Transplantation of Endocrine Organs and Tissues of the Ministry of Health of Ukraine, Kyiv, Ukraine. 8Dr. César Bergadá" (CEDIE), CONICET-FEI-División de Endocrinología, Buenos Aires, Argentina. 9University of Campinas, Campinas, Brazil. 10University Children’s Hospital, Krakow, Poland. 11The Royal Children’s Hospital Melbourne, Melbourne, Australia
Introduction: There is some variation in the practice of gonadectomy for individuals with Differences of Sex Development (DSD) worldwide. This quality improvement project aims to undertake continued surveillance of the occurrence of gonadectomy in suspected or confirmed cases of DSD.
Methods: Participating centres from the International-DSD Registry are sent a monthly email asking if a gonadectomy has been performed. A secondary survey is then sent for additional information on those individuals who have had a gonadectomy and who have provided informed consent for inclusion in the I-DSD Registry. This project will run until December 2025 and recruitment remains open for interested parties.
Results: During the first 6 months, a total of 56 gonadectomies have been reported from 15 (45%) countries. A median of 1 (0, 5) gonadectomy has been reported per centre. So far, 17/56 (51%) of the cases have been registered on the Registry with secondary surveys complete from 14 (82%) of these. Of these, median age was 2.3 years (2 days, 20 years). Eleven (79%) gonadectomies were bilateral. The most common underlying diagnoses were disorders of gonadal development in 5 (36%), chromosomal DSD in 4 (29%) and disorders of androgen action in 3 (21). Indications for gonadectomy were for mitigation of tumour risk in 7 (50%), due to abnormal gonads in 3 (22%), to align with sex assignment in 2 (14%) and at parental request in 2 (14%). All individuals had been seen by a multidisciplinary team at a specialist centre prior to gonadectomy.
Conclusions: Prospective surveillance of rare procedures is possible via monthly email reporting. Such studies are essential to inform healthcare professionals regarding best practice in rare DSD conditions. Approximately 9 gonadectomies are reported per month in DSD specialist centres throughout the world. More data will be collected regarding the practices surrounding gonadectomy in these centres.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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