Gonadectomy in conditions affecting sex development – a registry-based cohort study

Lucas-Herald, A. K. et al. (2021) Gonadectomy in conditions affecting sex development – a registry-based cohort study. European Journal of Endocrinology, 184(6), pp. 791-801. (doi: 10.1530/EJE-20-1058) (PMID:33780351)

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Objectives: To determine trends in clinical practice for individuals with DSD requiring gonadectomy. Design: Retrospective cohort study. Methods: Information regarding age at gonadectomy according to diagnosis; reported sex; time of presentation to specialist center; and location of center from cases reported to the International DSD Registry and who were over 16 years old in January 2019. Results: Data regarding gonadectomy were available in 668 (88%) individuals from 44 centers. Of these, 248 (37%) (median age (range) 24 (17, 75) years) were male and 420 (63%) (median age (range) 26 (16, 86) years) were female. Gonadectomy was reported from 36 centers in 351/668 cases (53%). Females were more likely to undergo gonadectomy (n=311, p<0.0001). The indication for gonadectomy was reported in 268 (76%). The most common indication was mitigation of tumour risk in 172 (64%). Variations in the practice of gonadectomy were observed; of the 351 cases from 36 centers, 17 (5%) at 9 centers had undergone gonadectomy before their first presentation to the specialist center. Median age at gonadectomy of cases from high income countries and low/middle income countries (LMIC) was 13.0 yrs (0.1, 68) years and 16.5 yrs (1, 28), respectively (p<0.0001) with the likelihood of long-term retention of gonads being higher in LMIC countries. Conclusions: The likelihood of gonadectomy depends on the underlying diagnosis, sex of rearing and the geographical setting. Clinical benchmarks, which can be studied across all forms of DSD will allow a better understanding of the variation in the practice of gonadectomy.

Item Type:Articles
Glasgow Author(s) Enlighten ID:Lucas-Herald, Dr Angela and Kyriakou, Dr Andreas and Bryce, Dr Jillian and Ahmed, Professor Syed Faisal
Authors: Lucas-Herald, A. K., Bryce, J., Kyriakou, A., Lindhardt Ljubicic, M., Arlt, W., Audí, L., Balsamo, A., Baronio, F., Bertelloni, S., Bettendorf, M., Brooke, A., Claahsen-van der Grinten, H. L., Davies, J., Hermann, G., de Vries, L., Hughes, I. A., Tadokoro-Cuccaro, R., Darendeliler, F., Poyrazoglu, S., Ellaithi, M., Evliyaoglu, O., Fica, S., Stejereanu, L., Gawlik, A., Globa, E., Zelinska, N., Guran, T., Güven, A., Hannema, S., Hiort, O., Holterhus, P.-m., Iotova, V., Mladenov, V., Jain, V., Sharma, R., Jennane, F., Johnston, C., Guerra-Junior, G., Konrad, D., Gaisl, O., Krone, N. P., Krone, R., Lachlan, K., Li, D., Lichiardopol, C., Lisá, L., Levoni Markosyan, R., Mazen, I., Mohnike, K., Niedziela, M., Nordenstrom, A., Rey, R. A., Skae, M., Tack, L. J.W., Tomlinson, J. W., Weintrob, N., Cools, M., and Ahmed, S. F.
College/School:College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
Journal Name:European Journal of Endocrinology
ISSN (Online):1479-683X
Published Online:01 March 2021
Copyright Holders:Copyright © 2021 The Authors
First Published:First published in European Journal of Endocrinology 184(6): 791-801
Publisher Policy:Reproduced under a Creative Commons License

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Project CodeAward NoProject NamePrincipal InvestigatorFunder's NameFunder RefLead Dept
190419The International DSD Network (I-DSD)Syed Faisal AhmedMedical Research Council (MRC)G1100236/1Med - Child Health
160901European Disorders of Sex DevelopmentRichard SinnottEuropean Commission (EC)201444US - E-Science