Endocrine Abstracts

In recent years, there has been a significant evolution in the surgical approach to individuals with Differences of Sex Development (DSD). There is an increasing debate worldwide about the role of surgery and the ideal timing for surgical interventions in this population. Many teams have developed multidisciplinary clinics and apply the principles of shared decision-making and peer involvement when informing families about possible surgical outcomes. However, a review of the available data and literature on this topic reveals a lack of transparency regarding the actual prevalence and timing of surgical interventions worldwide. Additionally, structured and well-defined outcome data regarding long-term functional and psychological outcomes in this population is lacking. Therefore, our aim is to identify a comprehensive technical, surgical, and outcome dataset for DSD surgery. The standardised data collection will ultimately help to improve the quality of care, strengthen the evidence base and provide guidance on the long-term care of individuals with DSD. Our first step was to establish a baseline surgical dataset, informed by a thorough literature review and discussions within our national expert group. This dataset includes information on surgical techniques, postoperative complications, and functional as well as psychosexual outcomes. To reach a broad consensus on the essential data elements, we initiated a three-step Delphi process involving three online surveys in which participants were asked to assess predefined data categories. This will be followed by a final sounding board meeting. Participants in this process include paediatric urologists, paediatric endocrinologists, gynaecologists, psychologists, and peers. In conclusion, we are developing a core surgical dataset for DSD through a thorough process based on current evidence and an international expert consensus. By defining this dataset, we aim to improve the quality of future care and to better define the demographic landscape by obtaining standardised outcome data.