IDSD2026 Poster Abstracts Poster Abstracts (93 abstracts)
International variation in testosterone replacement therapy in boys and men with klinefelter syndrome: an I-DSD study
Mikaela Frixou 1 , Joseph McElvaney 1 , Malika Alimussina 1 , Lise Aksglaede 2 , Francesco Carlomagno 3 , Luminita Cima 4 , Simona Fica 4 , Christa E. Flueck 5 , Nicolò Francesco d’Addario 3 , Evgenia Globa 6 , Corinna Graseman 7 , Sabine Hannema 8 , Michael Hauschild 9 , Andrea Isidori 3 , Dominika Janus 10 , Anders Juul 2 , Lukas Kissling 5 , Daniel Konrad 11 , Nina Lenherr 11 , Inas Mazen 12 , Marek Niedziela 13 , Franziska Phan-Hug 14 , Sarah Wing-yiu Poon 15 , Sukran Poyrazoglu 16 , Ursina Probst 17 , Inge Ruiz 18 , Gianni Russo 19 , Prasath Sangeetha 20 , Sumudu N Seneviratne 21 , Savitha Shenoy 22 , Marianna Stancampiano 19 , Michael Steigert 23 , Jeremy W Tomlinson 20 , S Faisal Ahmed 1 & Angela Lucas-Herald 1
1– University of Glasgow, Glasgow, UK; 2Rigshospitalet Copenhagen, Copenhagen, Denmark; 3Sapienza University, Rome, Italy; 4Elias University Emergency Hospital, Bucharest, Romania; 5University of Bern, Bern, Switzerland; 6Ukrainian Scientific and Practical Center of Endocrine Surgery, Transplantation of Endocrine Organs and Tissues of MoH of Ukraine, Kyiv, Ukraine; 7University of Mainz, Mainz, Germany; 8Amsterdam UMC location Vrije Universiteit Amsterdam, Amsterdam, Netherlands; 9CHUV Children’s Hospital, Lausanne, Switzerland; 10Jagiellonian University Medical College, University Children’s Hospital, Krakow, Poland; 11University Children’s Hospital, Zurich, Switzerland; 12National Research Center, Cairo, Egypt; 13Poznan University of Medical Sciences, Poznan, Poland; 14EHC-Morges, Morges, Switzerland; 15Hong Kong Children’s Hospital, Hong Kong; 16University of Istanbul, Istanbul, Turkey; 17Kantonsspital, Winterthur, Switzerland; 18Luzerner Kantonsspital, Lucerne, Switzerland; 19San Raffaele Hospital, Milan, Italy; 20Oxford University Hospitals, Oxford, UK; 21University of Colombo, Colombo, Sri Lanka; 22Leicester Royal Infirmary, Leicester, England; 23Graubuenden Central Hospital, Chur, Switzerland
Background: Klinefelter syndrome (KS) is associated with hypergonadotrophic hypogonadism that requires testosterone replacement therapy (TRT). Currently there is a gap in evidence regarding optimal initiation of TRT. As such the aim of this study is to understand contemporary TRT in KS using real world data from SDMregistries.
Methods: The study was approved by the SDMRegistries Data Access Committee and all participating centres that had reported 47,XXY cases that were between the ages of 12-37 years at the time of the study were identified on the SDMregistries platform and asked to complete the I-DSD module.
Results: Of the 798 registered boys and men with KS, 406 (51%) met eligibility criteria, and of those, 373 (92%) were registered at centres that agreed to participate. Overall, longitudinal data were available for 267 (72%) from 16 centres and 11 countries worldwide with a median number of 5 cases per centre (1-133). The median (range) age of these cases at the time of the study was 22.2 yrs (12.4-37.6). Spontaneous onset of puberty was reported in 209 (78%). Overall,103 (39%) were on TRT: 50 (49%) on intramuscular, 31 (30%) on transdermal and 18 (17%) on oral preparations. The median (range) age of starting TRT was 16.7 yrs (11.2-34.4). At initiation of therapy, raised serum luteinizing hormone (LH), raised serum follicle stimulating hormone (FSH) and low serum testosterone (T) were reported in 63 (61%), 64 (62%) and 32 (31%) respectively. Of the 164 men not reported to be on testosterone therapy, the current median age was 16.6 yrs (12.9-35.9). Eight (5%) of these men were reported to have completely normal LH, FSH and T. Of the remaining 156, raised LH, raised FSH and low T was reported in 68 (41%), 90 (55%), and 13 (8%). There was significant inter-centre variability in median age of starting testosterone when adjusting for biochemistry (P <0.001).
Discussion: As expected there is great variability in the age, timing, and hormone profiles at which TRT is introduced across the world. The cases in I-DSD registry on the SDMregistries platform present a valuable opportunity to perform pragmatic trials of TRT in KS.
Volume 118
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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