Endocrine Abstracts

Congenital adrenal hyperplasia (CAH) occurs with an incidence of about 1 in 15,000. Several studies highlighted the suboptimal health status and care provision in adults with CAH that were associated with significant co-morbidities in relatively young adults. In 2023, we implemented CaHASE2 to develop a strategy for prospective collection of longitudinal health data of patients with CAH. Our recent CAH service evaluation suggested significant differences in the approach to CAH patients. The key aim of the current study is the identification of specific unmet needs in patients with CAH, through standardised phenotyping across all participating centres. In September 2023, PIs agreed a minimal dataset for the collection of real-world data in participating centres. The data will be collected using the international CAH registry (I-CAH; https://sdmregistries.org/). CaHASE2 was launched in November 2023. By May 2024, 20 centres from the UK and Ireland have been participating and have provided data into I-CAH. In total 334 adults (201 females, 130 males) with CAH have been recruited. Longitudinal data are available in 149 cases. We aim to recruit at least 400 adults with CAH by November 2024 with a first set of clinical data plus longitudinal data. The data will be analysed after the first completed 12 months cycle, and annually thereafter to assess the current level of care provision and inform the development of national CAH standards. In addition, we will establish a report that will provide participating centres with information about their local care provision in relation to other centres. This project will provide important information about the health status of CAH patients and how this might be related to differences in health care provision. Ultimately, such national data should lead to a higher degree of equality of service provision in all parts of the UK and Ireland.