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Adrenal (Excluding Mineralocorticoids)

SUN-464 - Cross-Sectional Assessment of the Health Status in Adults with CAH in the UK and Ireland - Cahase2

Sunday, June 14, 2026
9:00 AM - 4:00 PM CT
Location: ENDOExpo; Poster Floor
Disclosure(s):
Nils P. Krone, MD FRCPCH: Crinetics Pharmaceuticals: Consultant (); Neurocrine Biosciences: Consultant (), Grant Recipient (), Honorarium Recipient ()
Aled Rees, MD,PhD: Diurnal Ltd: Advisory Board (); Immedica Pharma AB: Honorarium Recipient (); Neurocrine Biosciences: Advisory Board (), Contracted Research (Principal Investigators must provide information, even if received by the institution) (), Honorarium Recipient (); Recordati Rare Disease: Advisory Board ()
Congenital adrenal hyperplasia (CAH) represents one of the most prevalent forms of primary adrenal insufficiency, affecting an estimated 1 in 15,000 individuals. Suboptimal health status and care provision among adults living with CAH has been described in several countries. The CaHASE2 initiative was launched to analyse the health status of adults with CAH in the UK and Ireland. So far, we have recruited 488 adults with CAH from 23 centres. Here we report a cross-sectional analysis using the most recent clinical real-world data from 254 patients (156 females) with data from clinic visits between November 2022 and September 2025 from 14 centres. The analysed cohort predominantly comprises younger to middle-aged adults (median age 39.2 yrs; range 18-86.1 yrs) with 67 (26%) patients aged 50 years or older. A considerable number of patients were overweight (26%), obese (35%) or severely obese 10%. Only 34% of patients had completely normal random blood pressures and 14% were on established antihypertensive therapy. Of note 7% had type 2 diabetes. Depression seemed to be more common (10% of patients; not known in 16%). Anxiety appeared less common (7%, but 20% unknown); 5% had other not specified mental health problems (19% unknown). 9% of patients smoked; in addition, 5% were ex-smokers. The majority of patients were treated with prednisolone (42%) and standard hydrocortisone (40%). Relative hydrocortisone equivalent doses had a median of 12.06 mg/m2/ day (IQR 5.42). Median fludrocortisone dose was 150 ug (range 50-500 ug; relative dose 78 ug/m2/day, range 18-207). One third of patients had 17-hydroxyprogesterone (17OHP) levels between 10-36 nmol/L with one third having 17OHP below 10 nmol/L and one third above 36 nmol/L. 70% of patients had androstenedione levels below 8 nmol/L. There is no discernible correlation between current glucocorticoid dosage and patient weight or body surface. There are clear signals of ongoing impaired health status and signs of suboptimal control in adults with CAH. Over the subsequent 12 months, the project will focus on collaborating with principal investigators to enhance the volume of real-world clinical data for all recruited patients and completeness of longitudinal data entries. This improved data completeness will be crucial for comprehensively investigating variations in healthcare provision, health status, and outcomes, and will facilitate the provision of anonymised benchmarking data to all participating centres.

*Unless otherwise noted, all abstracts presented at ENDO must not be released to the press or the public until the date and time of presentation. For oral presentations, the abstracts are embargoed until the session begins. The Endocrine Society reserves the right to lift the embargo on specific abstracts that are selected for promotion prior to or during ENDO.*