The ESE Rare Disease Committee, alongside ENDO-ERN, have engaged in an initiative to collect data concerning specific groups of patients with rare 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, supported by both ENDO-ERN and ESE, 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.

We would like to encourage all our members and associates to join us in this important initiative by registering on the e-REC platform and begin submitting data. 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.

You can find out more about the functionality of e-REC in this recent report. If you need any assistance, please email the EuRRECa team at info@eurreca.net.

Subscribe to our email alerts