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Endocrine Abstracts (2021) 73 OC14.5 | DOI: 10.1530/endoabs.73.OC14.5

ECE2021 Oral Communications Oral Communications 14: Across Endocrinology (6 abstracts)

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

Jillian Bryce1, Victoria di Guisto2, Salma Rashid Ali3, Kristi Alexandraki4, Nienke R Biermasz5, Maria Luisa Brandi6, Frederic Castinetti7, Maralyn Druce8, Laura Fugazzola9, 10, Gudmundur Johannsson11, Niki Karavitaki12, Anton Luger13, Monica Marazuela14, Stavroula Paschou4, 15, Luca Persani9, 10, Manel Puig-Domingo16, Nicole Reisch17, Camilla Schalin-Jantti18, Jacques Young19, Natasha M Appelman-Dijkstra5, Simona Grozinsky-Glasberg20, Alberto M Pereira5 & S. Faisal Ahmed1, 3;5

1University of Glasgow, Office for Rare Conditions, Glasgow, United Kingdom; 2European Society of Endocrinology, United Kingdom; 3University of Glasgow, Developmental Endocrinology Research Group, Glasgow, United Kingdom; 4National and Kapodistrian University of Athens, School of Medicine, Athens, Greece; 5Leiden University Medical Center, Division of Endocrinology, Dept of Medicine, Leiden, Netherlands; 6FIRMO Foundation, Florence, Italy; 7Marseille University, Assistance Publique Hopitaux de Marseille, Marseille, France; 8Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, United Kingdom; 9University of Milan, Dept. of Pathophysiology and Transplantation, Milan, Italy; 10Istituto Auxologico Italiano IRCCS, Milan, Italy; 11Sahlgrenska university Hospital, Gothenburg, Sweden; 12University of Birmingham, Institute of Metabolism and Systems Research, Birmingham, United Kingdom; 13Medical University of Vienna, Department of Medicine III, Vienna, Austria; 14Universidad Autónoma Madrid, Hospital de la Princesa, Madrid, Spain; 15Alexandra Hospital, Department of Clinical Therapeutics, Athens, Greece; 16University Hospital Germans Trias i Pujol, Department of Endocrinology and Nutrition, Badalona, Spain; 17LMU Klinikum, Medizinische Klinik IV, Munich, Germany; 18University of Helsinki, Helsinki University Hospital, Helsinki, Finland; 19University Paris-Saclay APHP, Department of Reproductive Endocrinology, Paris, France; 20Hadassah-Hebrew University Medical Center, Department of Endocrinology and Metabolism, Jerusalem, Israel


Following 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 clinical encounters.


The ESE’s Rare Disease Committee, formed in April 2020, created a COVID-19 taskforce which disseminated the use of e-REC through broad condition specific study groups. The e-REC platform does not collect personally identifiable information and does not require individual patient consent. The platform was made available to all centres to report a new confirmed or suspected case of COVID-19 in a patient with an existing endocrine or metabolic bone condition.


Since launching the e-REC platform for notification of COVID-19 infections in March 2020, a total of 21 centres from 10 countries have agreed to participate. Of these 21 centres, 10 were reporting patients < 18 yrs (ie children) and 14 were reporting those ≥18 yrs old (adults). Of the 21 centres, 16 (76%) centres from 9 (90%) countries have used e-REC to notify 100 cases of which 55 were confirmed COVID-19 infections and the remainder were suspected. The median number of cases reported per centre was 2 (range 1, 20) and the median number of cases reported per month was 11 (3, 28). Of the 100 cases, 93 were in adults. This total 100 cases can be further categorized as broad thematic categories of pituitary disorders (n, 36), adrenal disorders (n, 32), genetic (neuro)endocrine tumours (n, 12), thyroid disorders (n, 6), calcium/phosphate disorders (n, 6), bone dysplasia (n, 4), glucose and insulin disorders (n, 2), growth and genetic obesity disorders (n, 1) and disorders of sex development and maturation (n, 1).


The use of the e-REC platform for identifying COVID-19 infection in people with rare endocrine conditions has been accepted in several centres and the platform is open for new centres. The majority of cases that have been reported are in adults and a high percentage are confirmed cases. Preliminary data suggest that COVID-19 infections are being reported more often in some endocrine conditions and there is a need to understand the reason for these differences as well as the impact of the infection on these patients.

Volume 73

European Congress of Endocrinology 2021

22 May 2021 - 26 May 2021

European Society of Endocrinology 

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