European Society of Endocrinology (ESE) and Endo-ERN launch initiative to collect data on patients with rare endocrine conditions and COVID-19 (April 2020).
The ESE Rare Disease Committee, alongside Endo-ERN, have engaged in an initiative to collect data on patients with endocrine conditions, who are also affected by COVID-19. We believe this is a global unmet need and requires swift, concerted and coordinated action.
The European Registries for Rare Endocrine Conditions (EuRRECa) project, funded by EU CHAFEA and supported by ENDO-ERN, ESE and ESPE has developed an e-reporting tool (e-REC) which has been fully operational for over a year within a robust governance and ethical framework and which does not require individual patient consent. The platform is now open to all centres across the world to report a new confirmed or suspected case of COVID-19 in a patient with an existing endocrine or metabolic bone condition.
If you would like to use the e-REC platform to report a new COVID-19 infection in a patient with an existing condition, please visit the e-REC platform and create an account.
If you are already an active user of e-REC, then, after login, you will need to revise your ‘reporting set up’.
For more information from ESE on their activities, resources and information on COVID-19, visit their dedicated webpage.
Instructions for reporting a new COVID-19 case in a patient with an existing endocrine condition
The e-REC platform has been extended to capture new COVID-19 cases in all of the condition groups supported by EuRRECa.
COVID-19 cases can be reported as suspected or confirmed. If a case is suspected, it is recommended that the return is saved as ‘In Progress’ (not submitted) and once confirmed, the return can be revised.
To add COVID-19 in your Reporting set-up, ensure there are no In Progress returns upon log-in and open ‘reporting set-up’. Click on all the condition groups in adults or in children that you want to report on.
COVID-19 cases should be reported in the month the infection arose. COVID-19 cases that were identified in January, February or March can be added retrospectively as these reporting months will now remain open until 30th June 2020.