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. 2021 May 4;184(6):791-801.
doi: 10.1530/EJE-20-1058.

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

Angela K Lucas-Herald  1 , Jillian Bryce  1 , Andreas Kyriakou  1 , Marie Lindhardt Ljubicic  2 , Wiebke Arlt  3   4 , Laura Audi  5 , Antonio Balsamo  6 , Federico Baronio  6 , Silvano Bertelloni  7 , Markus Bettendorf  8 , Antonia Brooke  9 , Hedi L Claahsen van der Grinten  10 , Justin H Davies  11 , Gloria Hermann  12 , Liat de Vries  13   14 , Ieuan A Hughes  15 , Rieko Tadokoro-Cuccaro  15 , Feyza Darendeliler  16 , Sukran Poyrazoglu  16 , Mona Ellaithi  17 , Olcay Evliyaoglu  18 , Simone Fica  19 , Lavinia Nedelea  19 , Aneta Gawlik  20 , Evgenia Globa  21 , Nataliya Zelinska  21 , Tulay Guran  22 , Ayla Güven  23 , Sabine E Hannema  24   25 , Olaf Hiort  26 , Paul-Martin Holterhus  27 , Violeta Iotova  28 , Vilhelm Mladenov  28 , Vandana Jain  29 , Rajni Sharma  29 , Farida Jennane  30 , Colin Johnston  31 , Gil Guerra Junior  32 , Daniel Konrad  33 , Odile Gaisl  33 , Nils Krone  34 , Ruth Krone  35 , Katherine Lachlan  36 , Dejun Li  37 , Corina Lichiardopol  38 , Lidka Lisa  39 , Renata Markosyan  40 , Inas Mazen  41 , Klaus Mohnike  42 , Marek Niedziela  43 , Anna Nordenstrom  44 , Rodolfo Rey  45 , Mars Skaeil  46 , Lloyd J W Tack  47 , Jeremy Tomlinson  48 , Naomi Weintrob  13   49 , Martine Cools  47 , S Faisal Ahmed  1
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Free article

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

Angela K Lucas-Herald et al. Eur J Endocrinol. .
Free article

Abstract

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 centre; and location of centre 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 centres. 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 centres 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 centres, 17 (5%) at 9 centres had undergone gonadectomy before their first presentation to the specialist centre. Median age at gonadectomy of cases from high-income countries and low-/middle-income countries (LMIC) was 13.0 years (0.1, 68) years and 16.5 years (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.

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