Endocrine Abstracts

Congenital adrenal hyperplasia (CAH) is one of the commonest forms of primary adrenal insufficiency with an incidence of about 1 in 15,000. The first CaHASE study highlighted the suboptimal health status and care provision in adults with CAH. This was associated with significant co-morbidities in relatively young adults. In 2023, we implemented CaHASE2 (https://www.endocrinology.org/clinical-practice/research-projects/cahase-2/) to develop a strategy for prospective collection of longitudinal data. After agreeing a minimal dataset for the collection of real-world data, participating centres collect the longitudinal data using the international CAH registry (I-CAH; https://sdmregistries.org/). A total of 351 adults with CAH (213 females, 138 males) have been recruited until now and 1213 clinic visits were available for analysis. In the current dataset, there is a preponderance of younger to middle-aged adults in the patient cohort that has been currently recruited. Preliminary data collection and analysis suggests that there might be a temporal change in used glucocorticoids over time with an increased use of hydrocortisone and a decreased use of prednisolone. Based on available 17OHP concentrations a significant proportion of patients appear to be overtreated. A significant proportion of patients with CAH who have been recruited are overweight or obese. Currently 18 centres are actively recruiting and 5 are awaiting local approval to use the I-CAH registry. The data will be analysed in 12-month cycles, to assess the current level of care provision and inform the development of national CAH standards. Once longitudinal data are collected, we will be able to investigate differences in health care provision and potential differences in health status and outcomes.