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Glucocorticoid prescribing trends in congenital adrenal hyperplasia, 2017 to 2023

Roxas, A., Gihawi, A., Makarchuk, M., Bryce, J., Chen, M., Ahmed, S.F., Ali, S.R., Drake, A., Casipe, M., Groves, L., Idkowiak, J., Krone, R., Flueck, C., Nordenström, A., Reisch, N., Claahsen van der Grinten, H.L.., Adriaansen, B.P.H., Birkebaek, N.H., Hannema, S., Reilly, M.W O., Cussen, L., Zaric, S.P., Neumann, U., Baronio, F., Vieites, A., Alonso, G.F., Elsedfy, H., Mazen, I., Thankamony, A., Witczak, J., Rees, D.A.. ORCID: https://orcid.org/0000-0002-1165-9092, Atapattu, N., Seneviratne, S.N., Cools, M., El Kaddouri, Hayat, Perez, Alegria Ferri, Guven, A., Poyrazoglu, S., Fu, A., Janus, D., Globa, E., Shenoy, S., de Bruin, C., Korbonits, M., Adam, S., Wasniewska, M., Russo, G., Phan-Hug, F., Bonfig, W., Salerno, M., Tomlinson, J.W., Leka-Emiri, S., de Vries, L., Yarhere, I., Guaranga-Filho, G., van Eck, J., Bachega, T.A.S.S., Krone, N., De Bono, M., Davies, J.H., Segev-Becker, A., Iotova, V., Lenherr-Taube, N., German, A., Giordano, R., De Sanctis, L., Probst, U., Markosyan, R., Brewer, D., Costa, E.C. and Webb, E.A. 2026. Glucocorticoid prescribing trends in congenital adrenal hyperplasia, 2017 to 2023. Endocrine Connections , EC-25-0565. 10.1530/EC-25-0565

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Abstract

Objective This study investigates the utilization of modern glucocorticoid medications (Acecort®, Alkindi®, Efmody®, Plenadren®) for congenital adrenal hyperplasia due to 21-hydroxylase deficiency, examining prescribing patterns, barriers to adoption, and geographical and temporal trends. Methods A two-part study was conducted: a retrospective analysis of treatment regimens from the International Congenital Adrenal Hyperplasia Registry across 46 centres in 20 countries (2017-2023), and a qualitative survey of 39 centres regarding barriers to prescribing modern medications. Patients included both paediatric and adult populations. Data analysed included regional prescription trends, timing of modern glucocorticoid adoption, and identified barriers. Results From 2017-2023, 44 of 790 (5%) patients transitioned from traditional to modern glucocorticoid therapy, with the highest adoption in high-income Western European countries. Alkindi® was exclusively prescribed to patients under 8 years, while 97% of Efmody® users were 7 years or older. By 2023, modern glucocorticoid availability varied among centres: Alkindi® (54%), Efmody® (46%), Plenadren® (33%), and Acecort® (15%). Conclusion Adoption of modern glucocorticoid medications for congenital adrenal hyperplasia remains limited, with only approximately 5% of patients transitioning from traditional therapies. Significant barriers include legislative approval, supply chain challenges, and elevated costs.

Item Type: Article
Date Type: Published Online
Status: Published
Schools: Schools > Medicine
Publisher: BioScientifica
ISSN: 2049-3614
Funders: Medical Research Council
Projects: G1100236
Date of First Compliant Deposit: 11 March 2026
Date of Acceptance: 4 March 2026
Last Modified: 11 Mar 2026 16:11
URI: https://orca.cardiff.ac.uk/id/eprint/185686

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