Endocrine Abstracts

The European Reference Network on Rare Endocrine Conditions (Endo-ERN) was founded to improve access to high-quality health care across Europe for patients with rare hormonal disorders. It is meant to encompass all rare endocrine conditions with an equal distribution of paediatric and adult care. The Main Thematic Group (MTG) ‘Sex Development and Maturation’ is dedicated to the medical conditions involving the reproductive system in both sexes, including the broad ranges of Disorders of Sex Development (DSD) and hypogonadotropic hypogonadism. Medical issues that require special attention range from prenatal therapy in Congenital Adrenal Hyperplasia (CAH) to diagnosis and possibly gender assessment in DSD conditions as well as to hormonal therapies at the time of pubertal development and reproductive assessment in adulthood. The MTG stems from two previous European networks funded by the Cooperation of Science and Technology (COST) in Horizon 2020. The COST Actions GnRHnetwork and DSDnet recently met with the Endo-ERN MTG in order to discuss the most important issues for future care and also scientific progress. In order to provide a solid basis for the future approaches, the need for laboratory comparability across the life-span was emphasized, as well as the compilation of appropriate patient cohorts for clinical trials. Guidelines will help with the enhancement of common and equal management of patients with these rare conditions. Furthermore, through Endo-ERN and the inclusion of relevant patient advocates, this group will be able to pose with relevant stakeholders in the societal discussions on gender issues and overall management of DSD and intersex conditions. Additionally, the MTG can and will link with scientific projects involving basic science, because research on adequate model systems will always provide the basis for further studies on management in humans.