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Endocrine Abstracts

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ea0041ep14 | Adrenal cortex (to include Cushing's) | ECE2016

Adrenal crisis and sick day episodes among CAH patients: preliminary report based on international CAH (I-CAH) registry

Karunasena Nayananjani , Daniel Eleni , Bryce Jillian , Jiang Jipu , Faisal Ahmed S , Guran Tulay , Mendonca Berenice B , Bachega Tania A , Blankenstein Oliver , Koehler Birgit , Neumann Uta , Acerini Carlo , Krone Nils , Bonfig Walter , Mohnike Klaus , Elsedfy Heba , Ross Richard

Background: Congenital adrenal hyperplasia (CAH) is a rare condition that is associated with life long risk of adrenal crisis. Management of CAH demands a fine balance between excess glucocorticoid leading to adverse effects and too little glucocorticoid risking adrenal crises. Frequent occurrence of sick day episodes warrants dose adjustment and education regarding adrenal crisis. In a condition such as CAH it is difficult to collect sufficient data from small cohorts at a si...
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ea0081p3 | Adrenal and Cardiovascular Endocrinology | ECE2022

Long-term cardiometabolic morbidity in young adults wWith classic 21-hydroxylase deficiency congenital adrenal hyperplasia

Righi Beatrice , Rashid Ali Salma , Bryce Jillian , Tolinson Jeremy , Bonfig Walter , Baronio Federico , Costa Eduardo C , Guaragna-Filho Guilherme , T'Sjoen Guy , Cools Martine , Markosyan Renata , A S S Bachega Tania , C Miranda Mirela , Iotova Violeta , Falhammar Henrik , Ceccato Filippo , Daniel Eleni , Auchus Richard , Ross Richard , Ahmed Faisal

Background: Congenital adrenal hyperplasia (CAH) and long-term glucocorticoid treatment may be associated with an increased risk of developing cardiometabolic sequelae such as abnormal glucose homeostasis, hyperlipidaemia, hypertension, cardiovascular (CV) disease, obesity and osteoporosis.Objectives: To study the current practice amongst expert centres for assessing cardiometabolic outcomes in adult patients with 21-hydroxylase CAH and to assess the pre...
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ea0078p1 | Adrenal | BSPED2021

Analysis of therapy monitoring in the International Congenital Adrenal Hyperplasia Registry

Lawrence Neil , Bacila Irina , Dawson Jeremy , Bryce Jillian , van den Akker Erica , Sartori Sanchez Bachega Tania Aparecida , Baronio Federico , Birkebaek Niels Holtum , Bonfig Walter , Claahsen Hedi , Correa Costa Eduardo , Devries Liat , Elsedfy Heba , Guven Ayla , Hannema Sabine , Iotova Violeta , van der Kamp Hetty J , Clemente Leon Maria , Lichiardopol Corina Raducanu , Milenkovic Tatjana , Neumann Uta , Nordenstrom Ana , Poyrazoglu Sukran , Probst-Scheidegger Ursina , De Sanctis Luisa , Thankamony Ajay , Vieites Ana , Yavas Zehra , Ahmed Faisal , Krone Nils

Background: Congenital Adrenal Hyperplasia (CAH) requires exogenous steroid replacement and can be monitored with 17-OH Progesterone and Androstenedione. We reviewed real world data to evaluate these markers in relation to hydrocortisone dose in patients treated in 21 centres throughout 14 countries.Method: Retrospective cohort study using pseudonymised data from patients with 21α-Hydroxylase Deficiency recorded in the International Congenital Adren...
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ea0090oc5.2 | Oral Communications 5: Adrenal and Cardiovascular Endocrinology 1 | ECE2023

The association between hormonal control during infancy and testicular adrenal rest tumor development in males with congenital adrenal hyperplasia

Schroder Mariska , Neacşu Mihaela , Sweep Fred , Span Paul N , Adriaansen Bas , van Herwaarden Antonius , Bryce Jillian , Ahmed Faisal , Ali Salma , Aparecida Sartori Sanchez Bachega Tania , Baronio Federico , Holtum Birkebaek Niels , Bonfig Walter , Clemente Maria , Cools Martine , de Bruin Christiaan , de Vries Liat , Elsedfy Heba , Globa Evgenia , Guran Tulay , Guven Ayla , Amr Nermine Hussein , Januś Dominika , Konrad Daniel , Markosyan Renata , Miranda Mirela , Poyrazoğlu Şukran , Rees Aled , Salerno Mariacarolina , Stancampiano Marianna Rita , Vieitis Ana , Abali Zehra Yavas , - van der Grinten Hedi Claahsen

Background: Testicular Adrenal Rest Tumors (TART) in patients with congenital adrenal hyperplasia due to 21-hydroxylase deficiency (21OHD) or 11-hydroxylase deficiency (11OHD) are benign lesions causing testicular damage and infertility. We hypothesize that high ACTH exposure due to poor hormonal control during early life is promoting development of TART later in life.Objective: This study aims to examine the relation between early CAH diagnosis and cons...
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ea0066oc1.1 | Oral Communications 1 | BSPED2019

Exploring trends in the glucocorticoid and mineralocorticoid treatment of congenital adrenal hyperplasia by analysing data from the I-CAH registry

Bacila Irina-Alexandra , Blankenstein Oliver , Neumann Uta , Grinten Heidi L Claahsen-van der , Krone Ruth , Bachega Tania SS , Miranda Mirela C , Mendonca Berenice , Birkebaek Niels H , Cools Martine , Milenkovic Tatjana , Bonfig Walter , Tomlinson Jeremy W , Elsedfy Heba , Balsamo Antonio , Ortolano Rita , Hannema Sabine , Higham Claire , Atapattu Navoda , Lichiardopol Corina , Guran Tulay , Abali Zehra , Mohnike Klaus , Finken Martijn JJ , Vieites Ana , Darendeliler Feyza , Guven Ayla , Korbonits Marta , Vries Liat de , Costa Eduardo , Einaudi Silvia , Kamp Hetty van der , Iotova Violeta , Ross Richard , Ahmed S Faisal , Krone Nils

Introduction: There is no unified approach in clinical practice regarding the medical management of congenital adrenal hyperplasia (CAH), despite existent international guidance. We aimed to explore geographical and temporal variations in the treatment with glucocorticoids and mineralocorticoids of patients with CAH.Methods: We collected data recorded by 33 centres from 16 countries in the I-CAH Registry. We analysed patient visits between 1982 and 2018,...
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ea0094p16 | Adrenal and Cardiovascular | SFEBES2023

Acute adrenal insufficiency related adverse events in children with congenital adrenal hyperplasia (CAH): Changes during the period 2019-2022 in I-CAH

Tseretopoulou Xanthippi , R Ali Salma , Bryce Jillian , Amin Nadia , Atapattu Navoda , Bachega Tania , Baronio Federico , H Birkebaek Niels , Bonfig Walter , Davies Justin H. , Thomas Tessy , de Vries Liat , Elsedfy Heba , H Amr Nermine , E Flueck Christa , Globa Evgenia , Zelinska Natalia , Guran Tulay , Yavas Abali Zehra , Guven Ayla , E Hannema Sabine , Iotova Violeta , Konrad Daniel , Lenherr-Taube Nina , P Krone Nils , Leka-Emiris Sofia , Vlachopapadopoulou Elpis , R Lichiardopol Corina , Marginean Otilia , L Markosyan Renata , Neumann Uta , Niedzela Marek , Phan-Hug Franziska , Poyrazoglu Sukran , Probst Ursina , Randell Tabitha , Russo Gianni , Carolina Salerno Maria , Shnorhavorian Margarett , van Eck Judith , Vieites Ana , Wasniewska Malgorzata , Faisal Ahmed Syed

Background: In 2019, the International CAH Registry (I-CAH) performed a benchmarking exercise of acute adrenal insufficiency related adverse events including adrenal crises (AC) and sick day episodes (SDE).Methods: In 2022, I-CAH data on children aged <18 years at first visit with 21-hydroxylase deficiency CAH from 35 centres in 19 countries were analysed to examine the current occurrence of SDE and AC and compared t...
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ea0095oc8.4 | Oral Communications 8 | BSPED2023

Association of newborn screening of congenital adrenal hyperplasia with outcomes in the first 90 days of life: a multi-centre I-CAH registry analysis of contemporary practice

BN Lim David , Bryce Jillian , R Ali Salma , Tseretopoulou Xanthippi , H Birkebaek Niels , E Hannema Sabine , Campos-Martorell Ariadna , Clemente Maria , Neumann Uta , E Fluck Christa , Metzger Sara , E Krone Ruth , German Alina , Baronio Federico , Atapattu Navoda , N Seneviratne Sumudu , Cools Martine , Mieke Thery , Guran Tulay , Yavas Abali Zehra , Fu Antony , Janus Dominika , Wasniewska Malgorzata , Coco Roberto , Russo Gianni , Rita Stancampiano Marianna , Bonfig Walter , Salerno Mariacarolina , L Claahsen-Van Der Grinten Hedi , P.H. Adriaansen Bas , Bachega Tania , C Miranda Mirela , Marginean Otilia , De Sanctis Luisa , Probst Ursina , Lenherr-Taube Nina , Konrad Daniel , O'Connell Michele , Gawlik Aneta , E Sandberg David , Shnorhavorian Margarett , Krone Nils , Faisal Ahmed S , Davies Justin H

Aims: We studied the association of newborn screening (NBS) on early infancy outcomes in 21-hydroxylase deficiency (21OHD) congenital adrenal hyperplasia (CAH), using I-CAH registry data.Methods: From 2018-2023, data was available for 121 infants with 21OHD CAH (52 male) during the first 90 days of life from 26 centres in 15 countries. NBS was performed in 15 centres from 9 countries.Result...
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ea0094p161 | Adrenal and Cardiovascular | SFEBES2023

An international study of the association between local health care resources and acute adrenal insufficiency events in children with congenital adrenal hyperplasia

Tseretopoulou Xanthippi , R Ali Salma , Bryce Jillian , Nadia Amin , Atapattu Navoda , Bachega Tania , Baronio Federico , H Birkebaek Niels , Bonfig Walter , Claahsen-Van der Grinten L. Hedi , Cools Martine , de Sanctis Luisa , de Vries Liat , Elsedfy Heba , E Flueck Christa , Fu Antony , Guaragna-Filho Guilherme , Guran Tulay , Guven Ayla , E Hannema Sabine , Iotova Violeta , Konrad Daniel , Lenherr-Taube Nina , Korbonits Marta , P Krone Nils , Krone Ruth , Leka-Emiris Sofia , Lichiardopol R Corina , Luczay Andrea , L Markosyan Renata , Mazen Inas , Milenkovic Tatjana , Mohnike Klaus , Neumann Uta , Niedzela Marek , Nordenstrom Anna , Phan-Hug Franziska , Poyrazoglu Sukran , Probst Ursina , Randell Tabitha , Vieites Ana , Russo Gianni , Thankamony Ajay , van den Akker Erica , van Eck Judith , van der Kamp Hetty , G Wasniewska Malgorzata , Ahmed Syed Faisal

Background: The reported occurrence and management of acute adrenal insufficiency–related adverse events in children vary widely between centres and may depend on available resources.Methods: Real world data from the I-CAH Registry from 44 centres [32 from high income (HIC) and 12 from low/middle income (LMIC) countries] and a total number of 607 children were linked to the results of a health care survey of local r...
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ea0095p86 | Adrenal 2 | BSPED2023

An international study of the association between local health care resources and acute adrenal insufficiency events in children with congenital adrenal hyperplasia

Tseretopoulou Xanthippi , Ali Salma R , Bryce Jillian , Amin Nadia , Atapattu Navoda , Bachega Tania , Baronio Federico , Birkebaek Niels H , Bonfig Walter , Claahsen-Van der Grinten Hedi L , Cools Martine , de Sanctis Luisa , de Vries Liat , Elsedfy Heba , Flueck Christa E , Fu Antony , Guaragna-Filho Guilherme , Guran Tulay , Guven Ayla , Hannema Sabine E , Iotova Violeta , Konrad Daniel , Lenherr-Taube Nina , Korbonits Marta , Krone Nils P , Krone Ruth , Leka-Emiris Sofia , Lichiardopol Corina R , Luczay Andrea , Markosyan Renata L , Mazen Inas , Milenkovic Tatjana , Mohnike Klaus , Neumann Uta , Niedzela Marek , Nordenstrom Anna , Phan-Hug Franziska , Poyrazoglu Sukran , Probst Ursina , Randell Tabitha , Vieites Ana , Russo Gianni , Thankamony Ajay , van den Akker Erica , van Eck Judith , van der Kamp Hetty , Wasniewska Malgorzata G , Ahmed Faisal S

Background: The reported occurrence and management of acute adrenal insufficiency–related adverse events in children vary widely between centres and may depend on available resources.Methods: Real world data from the I-CAH Registry that included a total of 2478 patient years follow-up on 607 children from 44 centres were studied and their association to the results of a health care survey of these centres that enqui...
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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