e-REC

e-REC is an electronic reporting (e-reporting) programme that captures new clinical encounters. This allows for a better understanding of the occurrence of the rare endocrine and bone conditions covered by European Reference Networks (ERN) such as Endo-ERN and ERN BOND.

Compared to the Core Registry, where more detailed and longitudinal data is collected, e-REC only captures the number of new cases, suspected or confirmed, seen monthly at the participating expert centres. Because e-REC does not collect any personal data, there is no informed consent needed from the patient. It is a clinician-only platform designed to support the ERN’s in their continuous monitoring program.

e-REC is open to all centres that look after people with rare endocrine and bone conditions. It allows continuous reporting of core indicators of activity and enables clinical networks to objectively map the conditions and related activities. e-REC assists Endo-ERN and ERN BOND and its members in the continuous monitoring programme.

As a clinician or researcher, you can register for e-REC here. As a patient you can only contribute to the Core Registry.

Need help to enter new cases? Please have a look at our e-REC guide (, 1 MB)

You can download the e-REC data dictionary here.

You can find results from e-REC in our Annual Report. The newest report has been developed to describe the current activity in e-REC over a 5.5-year period from July 2018 to December 2023 inclusive.