Endocrine Abstracts

DSD is not a diagnosis but an umbrella term for a wide variety of rare congenital conditions concerning sex determination or differentiation. These conditions lead leading to complex requirements in diagnosis and healthcare. Like other rare conditions, the treatment of DSD poses unique challenges for the healthcare system. A lack of expertise and standards can lead to delayed diagnoses or misdiagnoses, while a lack of structured and evidence-based treatment services may result in over-treatment, under-treatment, or inadequate treatment causing poor outcomes. For this reason, national and international guidelines recommend specialised medical and psychosocial care for people with DSD from multidisciplinary teams in designated centres. However, the implementation of these recommendations has often been difficult, unstructured, and rarely evaluated. The DSDCare project, funded by the German Federal Ministry of Health from May 2020 to August 2023, aimed to implement a standardised care model for people with DSD, and to evaluate the quality of care in 10 centres in Germany. This talk describes the development of quality indicators for the evaluation of healthcare quality, as well as the assessment of healthcare quality in the participating specialized DSD centres which is conducted via a newly developed patient registry (DSDReg), starting in May 2021. Following the completion of the DSDCare-project, the DSDReg was successfully integrated into the German Reference Network DSD (DRN-DSD), thereby ensuring the long-term evaluation of healthcare quality. As of the end of 2025, 821 individuals with DSD have been included in the registry.