Glucocorticoid Prescribing Trends in Congenital Adrenal Hyperplasia, 2017 to 2023.

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Authors: A Roxas, A. Gihawi, M Makarchuk, J. Bryce, M Chen, S. Maqbool Ahmed, Ali, S R, A Drake, M Casipe, L Groves, J. Idkowiak, R. Krone
+59 more C. Flueck, Anna Nordenström, Reisch N, H. L. Claahsen-van der Grinten, Bas P H Adriaansen, Niels Birkebæk, Sabine Elisabeth Hannema, M W O Reilly, L Cussen, S.P Zaric, Uta Neumann, F. Baronio, Ana Vieites, G. F. Alonso, Heba Hassan Elsedfy, Inas Mazen, Ajay Thankamony, J. Witczak, D.A Rees, Navoda Atapattu, Sonia Isabelle Seneviratne, Martine Cools, Hayat El Kaddouri, Alegria Ferri Perez, Ayla Güven, S Poyrazoglu, Antony Fu, Dominika Januś, Evgenia Globa, Savitha Shenoy, Márta Korbonits, M. Wasniewska, S. Adam, C. de Bruin, G. Russo, Franziska Phan-Hug, Walter Bonfig, Mariacarolina Salerno, Tomlinson JW, Sofia Leka-Emiri, L. de Vries, I. Yarhere, G Guaranga-Filho, J van Eck, Tânia A.S.S. Bachega, Nils Peter Krone, M De Bono, Justin Huw Davies, Anat Segev‐Becker, Violeta Iotova, Nina Lenherr‐Taube, Alina German, Giordano, R, L De Sanctis, Ursina Probst‐Scheidegger, Renata L Markosyan, D. Brewer, E.C Costa, Emma Alice Webb
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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.Plain Language Summary This international study looked at how new medications for congenital adrenal hyperplasia are used globally. We found that despite increasing availability of new medications during the study time period, only a small number of patients (5%) switched to these newer treatments. This limited use is mainly due to high costs, problems with getting legal approval, and supply issues, highlighting unequal access to care worldwide.

Fields of Study & Subjects

Sexual Differentiation and Disorders Adrenal Hormones and Disorders Metabolism and Genetic Disorders

Publication details

Journal / source
Open Access CRIS of the University of Bern
Publication date
1 March 2026
Language
EN