ECEESPE2025 Poster Presentations Pituitary, Neuroendocrinology and Puberty (162 abstracts)
Preliminary results from the core registry-gender incongruence module: current insights and future directions
Silvia Ciancia 1 , Mariya Cherenko 2 , Daniel Klink 1 , Kanetee Busiah 3 , Regis Coutant 4 , Aneta Gawlik 5 , Wiktoria Kempinska 5 , Hedi Claahsen - van der Grinten 6 , Faisal Ahmed 2,7 , Sabine Hannema 8 & Martine Cools 1
1Ghent University Hospital, Department of Internal Medicine and Pediatrics, Service of Pediatric Endocrinology, Ghent, Belgium; 2Leiden University Hospital, Department of Medicine, Division of Endocrinology, Leiden, Netherlands; 3Lausanne University Hospital, Department of Pediatrics, Service of Endocrinology, Lausanne, Switzerland; 4Angers University Hospital, Department of Pediatrics, Service of Endocrinology, Lausanne, France; 5Medical University of Silesia, Department of Pediatrics and Pediatric Endocrinology, Katowice, Poland; 6Radboudumc, Department of Pediatrics, Service of Pediatric Endocrinology, Nijmegen, Netherlands; 7University of Glasgow, Office for Rare Conditions Registries, Glasgow, United Kingdom; 8Amsterdam UMC, Department of Pediatrics, Service of Pediatric Endocrinology, Amsterdam, Netherlands
JOINT2593
Objective: Healthcare for transgender and gender-diverse (TGD) adolescents varies across countries, and there are very few prospective and long-term outcome data. Therefore, a specific module dedicated to gender incongruence (GI) within the Core Registry (EuRRECa project) was developed to collect demographic and numerosity data while promoting the harmonization of care. Additionally, this project aims to facilitate longitudinal data collection through international, multicenter collaborations with the ultimate scope of fostering clinical research and refining current guidelines.
Methods: The module consists of five sections covering general information, including the presence of mental health comorbidities, as well as specific information on gonadal hormone suppression (GHS), gender-affirming hormone (GAH) therapy, fertility preservation, and gender-affirming surgery (GAS).
Results: As of December 2024, six centers from five European countries (Belgium, France, Poland, Switzerland, and the Netherlands) had actively joined the project. A total of 310 patients have been registered so far (Ghent 119, Katowice 81, Nijmegen 39, Lausanne 36, Amsterdam 27, Angers 8). The interest of patients in being contacted for research purposes, accessing the registry, and receiving the newsletter was investigated. If the vast majority of patients agreed to be contacted for research purpose by their responsible clinician, less than 40% gave consent to be contacted directly through the registry for outcome collection. The preliminary findings highlighted the existence of differences among centers, for example in protocols for the initiation of GHS and GAH, where variations in the age at the start of treatments and the choice of alternative formulations suggest the existence of differences in national regulations and healthcare policies, e.g. reimbursement criteria. Importantly, mental health comorbidities were commonly reported among TGD adolescents from all centers, emphasizing the need for comprehensive psychological assessment and targeted psychological care.
Conclusion: Despite being preliminary, the data collected so far highlight the importance of multicenter data collection in advancing knowledge on the care of TGD adolescents. Expanding this registry and fostering international collaboration will be crucial in standardizing protocols, improving care, and guiding evidence-based recommendations for TGD youth.
Key-words: transgender, adolescent, minor, Core Registry, EuRRECa.
Volume 110
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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