Continuous Monitoring Programme

The Continuous Monitoring exercise is running from 21 March until 14 April, 2023 to collect data for the period Jan-Dec 2022.

During this time, all members much complete a survey that has been sent to their HCP representatives for Endo-ERN. If you have not received this yet please contact our office.

Please download the key tools and resources for this data gathering period:

• Indicators List – Continuous Monitoring Manual V7.5 (, 927 KB)
• Slides from information session (, 484 KB)
• Endo-ERN Monitoring Template Data Collection (, 47 KB)

Background

To evaluate the performance of ERNs and ensure they are working towards their goal, the European Commission devised a set of 18 core performance indicators to ensure that both our network and members continue to meet the requirements and high standards expected of all ERNs in contributing to the rare disease community. At least once a year all HCPs involved in the ERNs provide insight into their data.

As part of the monitoring program, we have created a database of Clinical Trials and registered studies our members are running or partaking in across our various rare endocrine disease MTGs.

Submitting Patient Numbers – e-REC

We would like to emphasize that the preferred way to submit your patient numbers is via e-REC in our EuRRECa patient registries. As of next year (for 2023 data period) only numbers submitted in this manner will be accepted.

If your institution does not yet use our registry, we recommend looking into this now via their website guidance or at their helpdesk during the General Assembly.