Continuous Monitoring System

The Continuous Monitoring Programme started in 2018 to evaluate the performance of ERNs and ensure they are working towards their goal.

At the outset of the ERN initiative, the Board of Member States approved seven areas of intervention for ERNs. For each area, an objective and some relevant indicators were defined and agreed by all ERNs, becoming what is known as the core set of ERN indicators. With the launch of multi-year direct grants for ERNs (in September 2023), several key performance indicators used to assess the fulfilment of grant obligations have been added to the original set of indicators. See the complete list of indicators.

The Continuous Monitoring Programme is a mandatory exercise for Health Care Providers (HCPs) who are Full Members or Affiliated Partners of MetabERN.

In 2024, MetabERN HCPs will participate in this exercise following two main steps.

Continuous Monitoring Process

How to access the new EC monitoring platform

        • Each HCP needs to designate a person to report – the reporter. It can be the representative, the sub-representative, or other person.
        • The reporter must use (create, if not yet done) an EU login account and associate a mobile phone. This process is common to all EU IT platforms. You can create an account here.
        • Once the reporter has an EU login account, he or she must submit to MetabERN a request to use the new monitoring platform. To do so, the reporter must use this link and follow these instructions. The process is like the one used to ask for access to the CPMS.
        • The MetabERN local admin approves the request. The approval has immediate effect. However, please note that in exceptional circumstances it may take longer.
        • Once the approval is effective, the reporter can enter the monitoring platform using this link.

 

Type of data

Once in the platform, the reporter is requested to give details on two indicators:

          1. The number of new patients (indicator 2.2)
            • Definition: The number of patients with a diagnosis of Inherited Metabolic Diseases attending the HCP for the first time during the reporting period (1 January 2023 – 31 December 2023), whatever their age. It includes visits to outpatient clinics, hospital discharges, and emergencies, coming from national and international referrals.
          2. The use of Orphacodes (indicator 5.5)
            • Definition: Acknowledgement that the HCP uses or does not Orphacodes to code/classify patient cases.

 

Deadline

The deadline for each HCP to perform the Step 1 of the process is 29 February 2024.

 

How to access to the MetabERN Monitoring Form

All HCP representatives will receive an email with the link to access the MetabERN Monitoring Form. Please note that the link is specific for each HCP and can be shared with the reporter. If you did not receive the email, please contact the MetabERN Coordination Team at coordination@metab.ern-net.eu.

Type of data

HCP representatives are requested to give details about all the remaining indicators of the Continuous Monitoring System. The indicators concern the following activities performed by each HCP during the reporting period (year 2023) and falling within the scope of MetabERN:

          • Accredited and non-accredited education/training activities
          • Clinical Trials and Clinical Studies
          • Peer-reviewed publications in accredited scientific journals
          • Usage of the Unified European Registry for Inherited Metabolic Disorders (U-IMD)
          • Clinical Practice Guidelines and other types of Clinical Decision-making Tools
          • Congresses, conferences, meetings, and dissemination webinars

Please see the complete list of indicators and their detailed definitions.

Deadline

The deadline for each HCP to perform Step 2 of the process is 15 March 2024.