Searchable abstracts of presentations at key conferences in endocrinology

ea0039ep53 | Diabetes | BSPED2015

Too sweet for too long?

Ali Salma , Khetan Renu , Sachdev Pooja , Bhatt Jayesh

Background: Cystic fibrosis related diabetes (CFRD) is associated with deterioration in clinical status. Lung function and nutritional status deteriorate up to 2–4 years before a diagnosis of CFRD based on the oral glucose tolerance test (OGTT). Timely detection and treatment is crucial.Aims: To evaluate: i) adherence to CFRD screening guidelines and ii) whether identifying stages of progressive cystic fibrosis insulin deficiency (CFID) using the ex...

ea0078p4 | Adrenal | BSPED2021

Current management of acute adrenal insufficiency related adverse events in children- results of an international survey of specialist centres

Ali Salma , Bryce Jillian , Krone Nils , Claahsen-van der Grinten Hedi , Faisal Ahmed S.

Background: There is wide variation in the reported rate of acute adrenal insufficiency (AI) related adverse events (sick day episodes and adrenal crises) between centres.Objective: Evaluate the level of consensus on the criteria that should be considered ‘essential’ for defining and managing adverse events associated with acute AI in children.Methods: Active users of the International Congenital Adrenal Hyperplasia &...

ea0073aep116 | Calcium and Bone | ECE2021

European Registries for Rare Endocrine Conditions (EuRRECa): The use of an e-reporting tool for registering calcium and phosphate conditions

Ana Luisa Priego Zurita , Bryce Jillian , Ali Salma Rashid , Diana-Alexandra Ertl , Grasemann Corinna , Haeusler Gabriele , Rejnmark Lars , Ahmed Faisal , Natasha-Appelman Dijkstra , Agnès Linglart

IntroductionThe European Registries for Rare Endocrine Conditions (EuRRECa) project was launched in February 2018 and aims to support the needs of the endocrine and bone community by facilitating the collaboration between patients, health care professionals and researchers across Europe and beyond. It is closely linked to the European Reference Networks on Rare Endocrine Conditions (Endo-ERN) and Rare Bone Diseases (ERN BOND) with its registry EuRR-Bone....

ea0085p1 | Adrenal 1 | BSPED2022

Recommendations for hydrocortisone doses for emergency management and peri-operative care for childhood adrenal insufficiency. BSPED consensus guidelines

Mushtaq Talat , Ali Salma , Boulos Nabil , Boyle Roisin , Cheetham Tim , Davies Justin , Elder Charlotte , Gan Hoong-Wei , Hindmarsh Peter , Katugampola Harshini , Kerr Stephanie , Krone Nils , Salomon Estebanez Maria , Shenoy Savitha , Tollerfield Sally , Choong Wong Sze , Regan Fiona

Adrenal insufficiency (AI) is characterised by lack of cortisol production from the adrenal glands which is treated with replacement doses of hydrocortisone. At times of physiological stress there is an increased requirement for exogenous glucocorticoids, which if untreated can lead to an adrenal crisis. Currently there are no unified guidelines for those <18 years old in the UK; this can lead to a substantial variation in the management of AI in both an emergency and peri...

ea0081oc12.1 | Oral Communications 12: Reproductive and Developmental Endocrinology | ECE2022

The European Registries for Rare Endocrine Conditions (EuRRECa): the use of a core registry for collecting common data elements and clinician and patient reported outcomes

Priego Zurita Ana Luisa , Ali Salma Rashid , Bryce Jillian , Cools Martine , Danne Thomas , Dekkers Olaf M , Hiort Olaf , Katugampola Harshini , Linglart Agnes , Netchine Irene , Nordenstrom Anna , Patocs Attila , Pereira Alberto M , Persani Luca , Reisch Nicole , Smyth Arelene , Sumnik Zdenek , Taruscio Domenica , Visser Edward , Appelman-Dijkstra Natasha , Ahmed Faisal

Introduction: The European Registries for Rare Endocrine Conditions (EuRRECa) was created in collaboration with the European Reference Network on Rare Endocrine Conditions (Endo-ERN), the European Society for Paediatric Endocrinology and the European Society of Endocrinology to support the needs of the endocrine community.Aim: To describe the patient population and data entered in the EuRRECa Core Registry between June 2019 and December 2021.<p class...

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...

ea0081p180 | Reproductive and Developmental Endocrinology | ECE2022

European Registries for Rare Endocrine Conditions (EuRRECa): results from the e-Reporting platform for rare conditions (e-REC)

Rashid Ali Salma , Bryce Jillian , Luisa Priego Zurita Ana , Cools Martine , Danne Thomas , Katugampola Harshini , Dekkers Olaf M. , Hiort Olaf , Linglart Agnes , Netchine Irene , Nordenstrom Anna , Patocs Attila , M Pereira Alberto , Persani Luca , Reisch Nicole , Smyth Arelene , Sumnik Zdenek , Taruscio Domenica , Visser Edward , Appelman-Dijkstra Natasha , Ahmed Faisal

Background: EuRRECa ( is a web-based project that supports professional networks such as European Reference Networks (ERNs) in capturing standardised clinical information. The project includes an e-reporting registry (e-REC), which can be used to perform regular surveillance of specific events. Since 2018, e-REC has been used by the ERN for rare endocrine conditions (Endo-ERN) to understand the number of new clinical encounters at centres within this network.<p...

ea0063gp197 | Adrenal and Neuroendocrine - Clinical | ECE2019

Optimizing mineralocorticoid replacement therapy in patients with congenital adrenal hyperplasia and Addison’s disease

Pofi Riccardo , Prete Alessandro , Thornton-Jones Vivien , Bryce Jilian , Ali Salma , Ahmed Faisal , Koehler Birgit , Balsamo Antonio , Acerini Carlo , Cannuccia Amalia , Guven Ayla , Guran Tulay , Darendeliler Feyza , Higham Claire , Bonfig Walter , De Vries Liat , Mendonca Berenice B , Iotova Violeta , Krone Nils P , Krone Ruth , Lenzi Andrea , Arlt Wiebke , Ross Richard , Isidori Andrea M , Tomlinson Jeremy W

Background: Adrenal insufficiency (AI) results from deficient production/action of glucocorticoids (GCs), with or without deficiency of mineralocorticoids (MC) and adrenal androgens. GC treatment is essential but some patient needs MC therapy to allow sodium(Na+) retention, potassium(K+) excretion and to maintain normal plasma volume and blood pressure. Much attention has focused on optimization of GC replacement but no consensus exists for optimization o...

ea0056p677 | Paediatric endocrinology | ECE2018

Awareness & participation in rare disease registries within the European reference network on rare endocrine conditions (Endo-ERN)

Ali Salma R , Bryce Jillian , Cools Martine , Korbonits Marta , Beun Johan G , Taruscio Domenica , Beuschlein Felix , Danne Thomas , Dattani Mehul , Dekkers Olaf , Linglart Agnes , Netchine Irene , Nordenstrom Anna , Patocs Attila , Persani Luca , Smyth Arlene , Sumnik Zdenek , Edward Visser W , Hiort Olaf , Pereira Alberto M , Faisal Ahmed S

Background: Registries are of key importance for a centre of expertise. Endo-ERN consists of 71 reference centres (RCs) that cover several groups of rare endocrine conditions within 8 themes ( It is unclear if awareness, participation and availability of registries is uniform for all conditions within Endo-ERN.Objective: To determine the extent of engagement in registries of Endo-ERN members.Methods: Endo-ERN RC le...

ea0073oc14.5 | Oral Communications 14: Across Endocrinology | ECE2021

The use of e-REC for capturing the occurrence of covid-19 infections in people with rare endocrine conditions

Bryce Jillian , Guisto Victoria di , Ali Salma Rashid , Alexandraki Kristi , Biermasz Nienke R , Brandi Maria Luisa , Castinetti Frederic , Druce Maralyn , Fugazzola Laura , Johannsson Gudmundur , Karavitaki Niki , Luger Anton , Marazuela Monica , Paschou Stavroula , Persani Luca , Puig-Domingo Manel , Reisch Nicole , Schalin-Jantti Camilla , Young Jacques , Appelman-Dijkstra Natasha M , Grozinsky-Glasberg Simona , Pereira Alberto M , Ahmed S. Faisal

IntroductionFollowing the onset of the COVID-19 pandemic in early spring 2020, there was a need to identify the burden of this infection on people with rare endocrine conditions. The European Registries For Rare Endocrine Conditions (EuRRECa) was launched in 2018 in collaboration with Endo-ERN, ESPE and ESE to support the needs of the wider endocrine community. The project consists of an e-reporting (e-REC) platform that allows monthly reporting of new c...