Regular electronic reporting allows networks like Endo-ERN to understand how many people with rare endocrine conditions are encountered by its members, and supports the monitoring activity of the network.

e-REC (e-Reporting Of Rare Endocrine Conditions) is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of the rare endocrine conditions covered within Endo-ERN. This electronic reporting system allows measurement of core indicators of ERN activity, to objectively map the conditions, the services and other related activity.

The electronic reporting ‘card’ that doctors will receive via this system every month will ask them to indicate whether over the last month they have encountered any new cases of the conditions that are included in EndoERN. The doctors will then complete the card with the relevant information, and return it to the centralised office, which is located in Glasgow. On reporting a case, no identifiable or partially identifiable personal information will be provided to the central office. The Office will, however, provide the reporting doctor with a unique ID for the reported case. This ID will be stored locally with the reporting doctor so that the link with the individual case can be made if needed.

A report on the first six months activity on the pilot phase is available on the e-REC webpage. e-REC is now opened up to all centres from reporting month May 2019. New centres within as well as outwith Endo-ERN can sign up to report on the e-REC webpage.”