Rare Disease COVID-19 Task-force
ESE and ENDO-ERN have launched an initiative to collect data on patients with rare endocrine conditions and COVID-19, contribute your data by signing up here
The ESE Rare Disease Committee, alongside ENDO-ERN, have engaged in an initiative to collect essential data concerning specific groups of patients with rare endocrine conditions, who are also affected by COVID-19.
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. This 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.
Leading experts have convened to form the following Rare Endocrine Disease Study Groups. Along with Simona Glasberg and Alberto Pereira, the leads of this project, and Faisal Ahmed, the task leader, these Study Groups actively promote the use of e-REC as a surveillance tool and work to define condition-specific survey's to further capture patient data.
- Glucose and Insulin
- Genetic Endocrine Tumours
- Growth and Genetic Obesity
- Sex Development and Maturation
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 firstname.lastname@example.org.
The EuRRECa team is holding a series of e-REC Platform Drop-in sessions every two weeks on a Friday at 2pm CET to allow for demonstrations of the system and Q&A. More detailed information about these sessions can be found here.