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 ESEs 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.
22 Sep 2021 - 26 Sep 2021