TY  - JOUR
A1  - Nowotny, Hanna
A1  - Neumann, Uta
A1  - Tardy-Guidollet, Véronique
A1  - Ahmed, S. Faisal
A1  - Baronio, Federico
A1  - Battelino, Tadej
A1  - Bertherat, Jérôme
A1  - Blankenstein, Oliver
A1  - Bonomi, Marco
A1  - Bouvattier, Claire
A1  - Brac de la Perrière, Aude
A1  - Brucker, Sara
A1  - Cappa, Marco
A1  - Chanson, Philippe
A1  - Claahsen-van der Grinten, Hedi L.
A1  - Colao, Annamaria
A1  - Cools, Martine
A1  - Davies, Justin H.
A1  - Dörr, Helmuth-Günther
A1  - Fenske, Wiebke Kristin
A1  - Ghigo, Ezio
A1  - Giordano, Roberta
A1  - Gravholt, Claus H.
A1  - Huebner, Angela
A1  - Husebye, Eystein Sverre
A1  - Igbokwe, Rebecca
A1  - Juul, Anders
A1  - Kiefer, Florian
A1  - Léger, Juliane
A1  - Menassa, Rita
A1  - Meyer, Gesine
A1  - Neocleous, Vassos
A1  - Phylactou, Leonidas A.
A1  - Rohayem, Julia
A1  - Russo, Gianni
A1  - Scaroni, Carla
A1  - Touraine, Philippe
A1  - Unger, Nicole
A1  - Vojtková, Jarmila
A1  - Yeste, Diego
A1  - Lajic, Svetlana
A1  - Reisch, Nicole
T1  - Prenatal dexamethasone treatment for classic 21-hydroxylase deficiency in Europe
T2  - European journal of endocrinology
N2  - Objective: To assess the current medical practice in Europe regarding prenatal dexamethasone (Pdex) treatment of congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency.
Design and methods: A questionnaire was designed and distributed, including 17 questions collecting quantitative and qualitative data. Thirty-six medical centres from 14 European countries responded and 30 out of 36 centres were reference centres of the European Reference Network on Rare Endocrine Conditions, EndoERN.
Results: Pdex treatment is currently provided by 36% of the surveyed centres. The treatment is initiated by different specialties, that is paediatricians, endocrinologists, gynaecologists or geneticists. Regarding the starting point of Pdex, 23% stated to initiate therapy at 4–5 weeks postconception (wpc), 31% at 6 wpc and 46 % as early as pregnancy is confirmed and before 7 wpc at the latest. A dose of 20 µg/kg/day is used. Dose distribution among the centres varies from once to thrice daily. Prenatal diagnostics for treated cases are conducted in 72% of the responding centres. Cases treated per country and year vary between 0.5 and 8.25. Registries for long-term follow-up are only available at 46% of the centres that are using Pdex treatment. National registries are only available in Sweden and France.
Conclusions: This study reveals a high international variability and discrepancy in the use of Pdex treatment across Europe. It highlights the importance of a European cooperation initiative for a joint international prospective trial to establish evidence-based guidelines on prenatal diagnostics, treatment and follow-up of pregnancies at risk for CAH.
Y1  - 2022
UR  - http://publikationen.ub.uni-frankfurt.de/frontdoor/index/index/docId/63315
UR  - https://nbn-resolving.org/urn:nbn:de:hebis:30:3-633152
SN  - 1479-683X
N1  - This work was supported by the Deutsche Forschungsgemeinschaft (Heisenberg Professorship, 325768017 to N R and 314061271-TRR205 to N R and A H), the European Commission for funding EndoERN CHAFEA FPA grant no. 739527, the Eva Luise und Horst Köhler Stiftung & Else Kröner-Fresenius-Stiftung (2019_KollegSE.03 to H N) and the Stockholm County Council (Senior clinical research fellowship dnr RS 2019-1140 to S L), Stiftelsen Frimurare Barnhuset i Stockholm and Lisa and Johan Grönbergs Stiftelse.
N1  - This work was supported by the European Reference Network on Rare Endocrine Conditions.
VL  - 186
IS  - 5
SP  - K17
EP  - K24
PB  - Oxford University Press
CY  - Oxford
ER  -