e-REC is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of the rare conditions covered within networks such as ERN BOND and Endo-ERN. This is a joint platform originally set up by EuRRECa and has been specifically adapted for EuRR-Bone. The platform is open to all centres that look after people with rare bone and mineral conditions. It allows continuous reporting of core indicators of activity and enables clinical networks to objectively map the conditions and related activities. e-REC update reports can be found here and will appear every 6 months.
With approximately 5000 new encounters reported in e-REC since July 2018 across all condition groups covered by EuRRECa and EuRR-Bone, the data that are now available in e-REC are a valuable resource. Therefore some core features of these rare conditions and their presentation are explored through secondary surveys. These are developed for both EuRRECa as well as EuRR-Bone and more information can be found here