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ea0094p160 | Adrenal and Cardiovascular | SFEBES2023

Defining the basal serum cortisol cut-off for weaning patients off glucocorticoids in suspected tertiary adrenal insufficiency

Fahad Arshad Muhammad , Lawrence Neil , Elder Charlotte , Newell-Price John , Ross Richard , Debono Miguel

Background: Cut-offs for basal cortisol (early morning) have been determined to predict the 30-minute cortisol level post-synacthen, but not for determining when patients with suspected tertiary adrenal insufficiency (AI) are weaned off glucocorticoids.Aims: The aim of this study was to compare the predictive values of basal cortisol, basal ACTH and basal cortisol:ACTH ratio to determine appropriate thresholds to reduce ...

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ea0095p133 | Miscellaneous/other 2 | BSPED2023

Patient and public involvement: Techniques used to engage with children and young people about research in congenital adrenal hyperplasia

Tonge Joseph , Bacila Irina , Barker Nicki , Aslam Muniba , Salim Eliza , Walsh James , Phillips Bob , Krone Nils , Lawrence Neil

Background: Incorporating the ideas and views of children and young people (CYP) with endocrine conditions from early stages in the research life cycle will increase the benefit for patients and contribute to high impact research.Methods: We conducted two days of patient and public involvement (PPI) sessions with patients from a tertiary endocrine centre who are living with Congenital Adrenal Hypoplasia (CAH). We explore...

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ea0094p12 | Adrenal and Cardiovascular | SFEBES2023

Service evaluation suggests variation in clinical care provision in adults with congenital adrenal hyperplasia in the UK and Ireland

Madden Doyle Lauren , Faisal Ahmed Syed , Elford Sue , Elhassan Yasir , James Lynette , Lawrence Neil , Llahana Sofia , Rees Aled , Tomlinson Jeremy , O'Reilly Michael , Krone Nils

Background: The Congenital adrenal Hyperplasia (CAH) Adult Study Executive (CaHASE) identified poor metabolic outcomes and reduced quality of life in CAH. CaHASE2 was recently established to examine the current status of CAH care. We surveyed clinical practice in the UK and Ireland, and awareness and use of the International CAH (I-CAH) Registry.Methods: We undertook an anonymised online survey targeting clinicians provi...

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ea0078oc4.7 | Oral Communications 4 | BSPED2021

The use of urinary steroid profiles in monitoring therapy in children with 21-hydroxylase deficiency – results from the CAH-UK cohort study

Bacila Irina , Lawrence Neil , Alvi Sabah , Cheetham Timothy , Crowne Elizabeth , Das Urmi , Dattani Mehul , Davies Justin H , Gevers Evelien , Krone Ruth , Kyriakou Andreas , Patel Leena , Randell Tabitha , Ryan Fiona , S Faisal Ahmed , Keevil Brian , Taylor Norman , Krone Nils

Introduction: Monitoring glucocorticoid (GC) replacement in patients with congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency (21OHD) remains challenging. There are disease-specific patterns in the plasma and urinary steroid profiles in 21OHD, a key role being played by the 11-oxygenatedC19 androgens. Aim: To explore the urinary steroid profile in 21OHD in relation to treatment and plasma steroids. Methods: Partic...

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ea0095p81 | Adrenal 2 | BSPED2023

National service evaluation of care for children and young people with congenital adrenal hyperplasia in the UK: Survey responses from patients and clinicians

Lawrence Neil , Bacila Irina , Ji Xiaochen , Faisal Ahmed S , Alvi Sabah , Bath Louise , Blair Jo , Cheetham Tim , Crowne Liz , Davies Justin H , Dattani Mehul , Gevers Evelien , Krone Ruth , Patel Leena , Thankamony Ajay , Randell Tabitha , Ryan Fiona , Elford Sue , Blackett Sallyann , Krone Nils

Aim: To quantify difference in service provision for children and young people (CYP) living with CAH across the UK.Methods: A national service evaluation using online questionnaires circulated to patients and clinicians from secondary and tertiary UK centres managing CYP with CAH, and via the Living with CAH support group mailing list.Results: Total of 195 responses rel...

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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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Endocrine Abstracts

Defining the basal serum cortisol cut-off for weaning patients off glucocorticoids in suspected tertiary adrenal insufficiency

Patient and public involvement: Techniques used to engage with children and young people about research in congenital adrenal hyperplasia

Service evaluation suggests variation in clinical care provision in adults with congenital adrenal hyperplasia in the UK and Ireland

The use of urinary steroid profiles in monitoring therapy in children with 21-hydroxylase deficiency – results from the CAH-UK cohort study

National service evaluation of care for children and young people with congenital adrenal hyperplasia in the UK: Survey responses from patients and clinicians

Analysis of therapy monitoring in the International Congenital Adrenal Hyperplasia Registry

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