The Continuous Monitoring exercise is to be completed by Endo-ERN HCPs (Full Member and Affiliated Partners) for 2023 data will run from January 1 – February 29, 2024.  

If you did not complete your submission before February 29 please contact Emily White for next steps.  

During this time, all Endo-ERN HCPs must complete the following steps:  

1.  Download your centre’s new Patient Numbers for rare endocrine diseases in 2023 via e-REC

• • • If your e-REC submission is not up-to-date or if you experience difficulties reporting, please obtain these numbers from your local system contact the registries team for support AND our evaluation manager Emily White.  

2.  Report in the DG Sante/European Commission portal directly on 2 indicators:  

• • •  Download the guide for requesting access to the new ERN monitoring platform 
    • Link to platform
      

3.  Complete the survey on the remaining indicators that has been sent to the HCP representatives from Endo-ERN

This presentation and this video describes the exercise and the changes for 2024.   Please note that the date for the DG Sante webinar is 12 January at 1630-1730 CET.  If you did not receive an invitation please contact Endo-ERN.   

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

• Indicators List- Continuous Monitoring Manual v8.1
  
• Endo-ERN Monitoring Template for HCP team Data Collection (updated) 
• How to download my full HCP patient numbers from e-REC
• Continuous Monitoring FAQ
  

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 of October 2023, a new set of grant indicators will be measured alongside the 18 indicators that are listed in the manual.  

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 correct way to submit your patient numbers is via e-REC in our EuRRECa patient registries. As of the 2024 continuous monitoring exercise 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 by joining a Drop-in session.