for Physicians
for Patients

Continuous ERN Monitoring

The European Commission has established the Continuous ERN Monitoring System (CEMS) (also known as the Continuous ERN Monitoring Exercise) to ensure transparency, accountability, and continuous improvement across the European Reference Networks (ERNs). Participation is mandatory for all ERN members, including ERKNet Full Members and Affiliated Partners.

Each healthcare provider (HCP) being a member of an ERN plays a crucial role by providing information on the number of patients with rare diseases they treat, as well as on Orphacode usage and other network activities. Your contributions help demonstrate the impact of ERNs on patient care, highlight the expertise and collaboration within the network, and support the long-term sustainability of the ERN system.

By participating in CEMS, you are helping ERKNet showcase the valuable work being done across Europe and contributing directly to improving care for patients with rare and complex conditions.

In the following sections, you will find an overview of all relevant information to guide you through this year’s process. This webpage will be updated regularly with the latest guidance and resources to support you in completing this important task.

Data Collection Period: 
The data collection process is now open and will continue until 28 February 2026 for healthcare providers (HCPs) and until March 2026 for European Reference Networks (ERNs).

 

Monitoring Process

The monitoring process is divided into two parts, each of which requires different data from all healthcare providers (HCPs), including ERKNet full members and affiliated partners:

1. Part: HCPs need to upload the two core indicators for 2025 on the EU platform before 28 February 2026.

  • Number of new patients (see FAQs for definition)
  • Use of ORPHA-codes (Yes/No)

The EU Platform is accessible via this link .

 

2. Part: HCPs are asked to report additional data (e.g. on Meetings/Congresses/Conferences, Publications, Research Projects) to the ERKNet coordination office which needs to be done until mid-March 2026.

  • Please note: The ERKNet coordination office will provide all healthcare professionals (HCPs) with more detailed information on how to report this data very soon. Stay tuned!

 

Additional Information and FAQs

Additional information about the Monitoring Process can be found in the drop downs below.

1. Slides of EU Presentation about the Monitoring Process: Presentation_Slides Monitoring Workshop by EU 2026

2. Recording of EU Presentation about the Monitoring Process: Recording - Monitoring Workshop 2026

3. For further information about the Monitoring indicators: Indicators list - Continuous EU Monitoring Manual V9.1
 

The EU Login Account is needed to be able to access the EU Platform to upload the two core indicators.

Please find all Infos about how to create, manage and use an EU-Login account

Yes, HCPs need an EU Login, and access to the EU Platform: https://webgate.ec.europa.eu/sante-xmlgate/sdcp-1/#!/forms

Concerning the EU Login, you can find more information on this website: https://trusted-digital-identity.europa.eu/creating-managing-and-using-your-eu-login-account/managing-your-eu-login-account-options-and-details_en

Feel free to download the instruction documents containing step-by-step guides on how to create an EU Login and request access to the EU Platform. You can find these under 'Additional Documents and Material'.

 

No! 
All deadlines are strict and defined by the European Commission. Neither ERNs nor HCPs can request extensions. Please be aware of that when submitting your data. 

The reporting period always covers one calendar year, running from 1 January to 31 December. For the current monitoring period, this is: 1 January 2025 to 31 December 2025.

Definition by the EU:  The total number of patients attending the HCP for the first time during the reporting period, whose disease or condition falls within the scope of the ERN, whatever their age and sex (includes visits to outpatient’s clinics, hospital discharges and emergencies, coming from national and international referrals). 

In relation to ERKNet, this means only patients with a disease or condition falling within the scope of rare kidney diseases should be included. 

Please read the section 'What if an HCP is a member of multiple ERNs?' if a patient has multiple diagnoses that fall within the scope of different ERNs.

Healthcare professionals (HCPs) who are members of more than one European Reference Network (ERN) must create a separate dossier for each ERN on the EU Platform: https://webgate.ec.europa.eu/sante-xmlgate/sdcp-1/#!/forms

Please note: Patients should generally only be counted once.

However, if a patient has distinct medical conditions relevant to different ERNs, they can be counted separately for each ERN, meaning they appear more than once in total.

A “new patient” is a patient who: 

  • was newly admitted and diagnosed at the same hospital in 2025.

Or 

  • has been treated in the same hospital before, but received a confirmed diagnosis only in 2025. 

 

Please note: Patients who have received treatment at the hospital but have not received a confirmed diagnosis do not count as new patients. Furthermore, please note that only diagnoses falling within the scope of the European Reference Network for Rare Kidney Diseases (ERKNet) must be considered. 

Definition by the EU: 
Acknowledgement that a clinical centre (HCP) uses orphacodes to code/classify patient cases in the local medical record system, regardless of using other types of coding (e.g. for reimbursements). 

In terms of the two core indicators (number of new patients and use of orphacodes):

Yes, these must be reported directly by HCPs on the EU platform. Data submitted by ERNs is clearly identified as such and cannot be amended afterwards. This means that HCPs who have not uploaded their data by 28 February 2026 will be marked as having submitted nothing.

 

Regarding the additional indicators:

Yes, the ERKNet coordination office will report them on behalf of the HCPs to the EU after receiving them from all ERKNet full members and Affiliated Partner centres. This means that all HCPs only need to provide these to the ERKNet coordination office, instead of providing them directly to the EU.

For any issue concerning the Monitoring process or especially technical support, EU Login issues, or access requests, HCPs can contact either: