Prenatal dexamethasone treatment for classic 21-hydroxylase deficiency in Europe
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Prenatal dexamethasone treatment for classic 21-hydroxylase deficiency in Europe. / Nowotny, Hanna; Neumann, Uta; Tardy-Guidollet, Veronique; Ahmed, S. Faisal; Baronio, Federico; Battelino, Tadej; Bertherat, Jerome; Blankenstein, Oliver; Bonomi, Marco; Bouvattier, Claire; de la Perrière, Aude Brac; Brucker, Sara; Cappa, Marco; Chanson, Philippe; Van der Grinten, Hedi L. Claahsen; Colao, Annamaria; Cools, Martine; Davies, Justin H.; Dörr, Helmut-Günther; Fenske, Wiebke K; Ghigo, Ezio; Giordano, Roberta; Gravholt, Claus H.; Huebner, Angela; Husebye, Eystein Sverre; Igbokwe, Rebecca; Juul, Anders; Kiefer, Florian W.; Léger, Juliane; Menassa, Rita; Meyer, Gesine; Neocleous, Vassos; Phylactou, Leonidas A.; Rohayem, Julia; Russo, Gianni; Scaroni, Carla; Touraine, Philippe; Unger, Nicole; Vojtkova, Jarmila; Yeste, Diego; Lajic, Svetlana; Reisch, Nicole.
I: European Journal of Endocrinology, Bind 186, Nr. 5, 2022, s. K17-K24.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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TY - JOUR
T1 - Prenatal dexamethasone treatment for classic 21-hydroxylase deficiency in Europe
AU - Nowotny, Hanna
AU - Neumann, Uta
AU - Tardy-Guidollet, Veronique
AU - Ahmed, S. Faisal
AU - Baronio, Federico
AU - Battelino, Tadej
AU - Bertherat, Jerome
AU - Blankenstein, Oliver
AU - Bonomi, Marco
AU - Bouvattier, Claire
AU - de la Perrière, Aude Brac
AU - Brucker, Sara
AU - Cappa, Marco
AU - Chanson, Philippe
AU - Van der Grinten, Hedi L. Claahsen
AU - Colao, Annamaria
AU - Cools, Martine
AU - Davies, Justin H.
AU - Dörr, Helmut-Günther
AU - Fenske, Wiebke K
AU - Ghigo, Ezio
AU - Giordano, Roberta
AU - Gravholt, Claus H.
AU - Huebner, Angela
AU - Husebye, Eystein Sverre
AU - Igbokwe, Rebecca
AU - Juul, Anders
AU - Kiefer, Florian W.
AU - Léger, Juliane
AU - Menassa, Rita
AU - Meyer, Gesine
AU - Neocleous, Vassos
AU - Phylactou, Leonidas A.
AU - Rohayem, Julia
AU - Russo, Gianni
AU - Scaroni, Carla
AU - Touraine, Philippe
AU - Unger, Nicole
AU - Vojtkova, Jarmila
AU - Yeste, Diego
AU - Lajic, Svetlana
AU - Reisch, Nicole
N1 - Publisher Copyright: © 2022 BioScientifica Ltd.. All rights reserved.
PY - 2022
Y1 - 2022
N2 - Objective: To assess the current medical practice in Europe regarding prenatal dexamethasone (Pdex) treatment of congenital adrenal hyperplasia (CAH) due to 21-hydroxylase defic iency. 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 ce ntres. 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.
AB - Objective: To assess the current medical practice in Europe regarding prenatal dexamethasone (Pdex) treatment of congenital adrenal hyperplasia (CAH) due to 21-hydroxylase defic iency. 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 ce ntres. 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.
U2 - 10.1530/EJE-21-0554
DO - 10.1530/EJE-21-0554
M3 - Journal article
C2 - 35235536
AN - SCOPUS:85128000223
VL - 186
SP - K17-K24
JO - European Journal of Endocrinology
JF - European Journal of Endocrinology
SN - 0804-4643
IS - 5
ER -
ID: 328536475