ESPE2021 Free Communications Fetal Endocrinology and Multisystem Disorders (6 abstracts)
The Use Of e-REC For Capturing The Occurrence Of COVID-19 Infections In People With Rare Endocrine Conditions
Jillian Bryce 1 , Vicki Di Guisto 2 , Salma R. Ali 3 , Krystallenia Alexandraki 4 , Corin Badiu 5 , Federico Baronio 6 , Nienke R. Biermasz 7 , Maria Luisa Brandi 8 , Frederic Castinetti 9 , Filippo Ceccato 10 , Irina-Oana Chifu 11 , Martine Cools 12,13 , Thomas Danne 14 , Maralyn Druce 15 , Daniela Esposito 16 , Henrik Falhammar 17,18 , Laura Fugazzola 19 , Hoong-Wei Gan 20 , Roberta Giordano 21 , Andrea M. Isidori 22 , Gudmundur Johannsson 23 , Niki Karavitaki 24 , Agnes Linglart 25 , Anton Luger 26 , Pietro Maffei 10 , Monica Marazuela 27 , Vladka Pandzic Jaksic 28 , Stavroula A. Paschou 29 , Luca Persani 30,31 , Manuel Puig Domingo 32 , Nicole Reisch 33 , Camilla Schalin-Jantti 34 , Erica L.T. Akker van den 35 , Dimitra Vassiliadi 36 , Jacques Young 37 , Natasha Appelman-Dijkstra 38 , Simona Grozinsky-Glasberg 39 , Alberto M. Pereira 38 & S. Faisal Ahmed 1,3,38
1Office for Rare Conditions, University of Glasgow, Glasgow, United Kingdom.;2European Society of Endocrinology, Bristol, United Kingdom.;3Developmental Endocrinology Research Group, University of Glasgow, Glasgow, United Kingdom.;42nd Department of Surgery, Medical School, National and Kapodistrian University of Athens, Athens, Greece.;5"C.I.Parhon" National Institute of Endocrinology, Bucharest, Romania.;6Department Hospital of Woman and Child, Pediatric Unit, IRCSS AOU S.Orsola-Malpighi University Hospital, Bologna, Italy.;7Leiden University Medical Center, Division of Endocrinology, Leiden, Netherlands.;8FIRMO Foundation, Florence, Italy.;9Aix Marseille University, Assistance Publique Hopitaux de Marseille, Department of Endocrinology, Marseille, France.;10Department of Medicine, Padua University Hospital, Padova, Italy.;11University Hospital of Würzburg, Division of Internal Medicine I, Department of Endocrinology and Diabetes, Würzburg, Germany.;12Pediatric Endocrinology Service, Ghent University Hospital, Ghent, Belgium.;13Department of Internal Medicine and Paedicatrics, Ghent University, Ghent, Belgium.;14Childrens Hospital AUF DER BULT, Hannover, Germany.;15Centre for Endocrinology, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, United Kingdom.;16University of Gothenburg and Sahlgrenska University Hospital, Gotheburg, Sweden.;17Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden.;18Department of Endocrinology, Karolinska University Hospital, Stockholm, Sweden.;19Istituto Auxologico Italiano IRCCS and Dept. of Pathophysiology and Transplantation, University of Milan, Milan, Italy.;20Department of Endocrinology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom.;21Division of Endocrinology, Diabetology and Metabolism, Department of Medical Sciences, Department of Biological and Clinical Sciences, University of Turin, Turin, Italy.;22Department of Experimental Medicine, Sapienza University of Rome, Rome, Italy.;23Sahlgrenska University Hospital, Gothenburg, Sweden.;24Institute of Metabolism and Systems Research, College of Medical and Dental Sciences University of Birmingham, Birmingham, United Kingdom.;25AP-HP Bicêtre Paris Saclay, Paris, France.;26Department of Medicine III, Medical University of Vienna, Vienna, Austria.;27Hospital de la Princesa, Universidad Autónoma Madrid, Madrid, Spain.;28Department of Endocrinology, Diabetes and Clinical Pharmacology, Dubrava University Hospital, Zagreb, Croatia.;29Division of Endocrinology, Diabetes and Metabolism, Department of Clinical Therapeutics, Alexandra Hospital, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece.;30Istituto Auxologico Italiano, Milan, Italy.;31University of Milan, Milan, Italy.;32Department of Endocrinology and Nutrition, Health Sciences Research Institute & University Hospital Germans Trias i Pujol, Badalona, Spain.;33Klinik IV, LMU Klinikum, Munich, Germany.;34Endocrinology, Helsinki University Hospital and University of Helsinki, Helsinki, Finland.;35Department of Pediatrics, division of Pediatric Endocrinology and Obesity Center CGG, Erasmus MC Sophia Children’s Hospital, Erasmus University Medical Center, Rotterdam, Netherlands.;36Department of Endocrinology, Diabetes And Metabolism, National Expertise Centre of Rare Endocrine Disorders, “Evangelismos” General Hospital, Athens, Greece.;37University Paris-Saclay, APHP, Department of Reproductive Endocrinology, Paris, France.;38Dept of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, Netherlands.;39Neuroendocrine Tumor Unit, ENETS Center of Excellence, Department of Endocrinology and Metabolism, Hadassah-Hebrew University Medical Center, Jerusalem, Israel
Introduction: 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.
Methods: 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 new encounters of confirmed or suspected cases of COVID-19 in patients with an existing rare endocrine or metabolic bone condition.
Results: Since launching the e-REC platform for notification of COVID-19 infections in March 2020, a total of 24 centres from 12 countries are participating. Of these 24 centres, 10 were reporting patients <18yrs (ie children) and 17 were reporting those ≥18yrs old (adults). Of the 24 centres, 20 (83%) centres from 12 (100%) countries have used e-REC to notify 194 cases of which 140 were confirmed COVID-19 infections and the remainder were suspected. The median number of cases reported per centre was 4.5 (range 1, 46) and the median number of cases reported per month was 11 (0, 36). Of the 194 cases, 164 were in adults. This total 194 cases can be further categorized as broad thematic categories of pituitary disorders (n, 72), adrenal disorders (n, 54), genetic (neuro)endocrine tumours (n, 24), growth and genetic obesity disorders (n, 13), calcium/phosphate disorders (n, 10), thyroid disorders (n, 8), bone dysplasia (n, 6), disorders of sex development and maturation (n, 5) and glucose and insulin disorders (n, 2).
Conclusion: 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 and the impact of the infection on these patients.
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