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. Over 10 years ago, 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. The Congenital adrenal Hyperplasia Adult Study Executive (CaHASE) supported by the Society for Endocrinology was formed in 2003 to study the health status of adults with CAH. CaHASE has become the landmark global study informing on the health status in adults with CAH and identified poor health outcomes and variability in care provision However, considering that recruitment into CaHASE took place from 2003 and 2007, the data from this study reflects the situation in the UK from 15 to 20 years ago. CAH clinical guidelines publicised in the early 2000s suggested changes in the use and dosage of corticosteroid replacement in CAH in all age groups. Thus, there is now a generation of young adults with CAH, who should have been treated differently during childhood and adolescence than the cohorts investigated in the early to mid 2000s. In addition, the health status of older adults remains elusive. This year, the Society for Endocrinology performed an online survey of its members suggesting significant variation in CAH care provision in the UK and Ireland. This included the clinical setting, frequency of clinical reviews, treatment regimens and CAH monitoring.

We have therefore developed a programme of work:

• To reassess the clinical management and health status of adults living with CAH in the UK and Ireland, twenty years after the first CaHASE study.

• To implement a strategy for prospective continuous recruitment with longitudinal data collection in I-CAH.

• To identify specific unmet needs, through standardised, deep clinical phenotyping across all participating centres.