1. Upcoming Annual Data Collection (January 2027)
Continuous monitoring ensures that our networks constantly improve and clearly demonstrate their real-world value. This framework is key to building a high-quality system, measuring patient outcomes, celebrating our successes, and identifying potential pitfalls.
Important Update for Members:
The next official ERN monitoring data collection exercise will officially start in January 2027, with a final submission deadline in March 2027.
The next official ERN monitoring data collection exercise will officially start in January 2027, with a final submission deadline in March 2027.
You do not need to take any action right now. All participating healthcare providers and Affiliated Partners will receive detailed instructions, credentials, and guidance materials in due time before the launch.
What Data Will You Need to Provide?
When the collection window opens, members are required to submit data covering the previous calendar year. Your team must report on the specific core metrics defined in the official European Commission ERN Continuous Monitoring Page. You can review the underlying parameters outlined in the original European Commission Continuous Monitoring Framework Document, which tracks:
When the collection window opens, members are required to submit data covering the previous calendar year. Your team must report on the specific core metrics defined in the official European Commission ERN Continuous Monitoring Page. You can review the underlying parameters outlined in the original European Commission Continuous Monitoring Framework Document, which tracks:
- Patient Volumes: The exact number of rare disease patients treated in your specific clinic.
- System Engagement: Your team’s activity levels within the Clinical Patient Management System (CPMS).
- Knowledge Sharing: Scientific publications produced by your clinical unit.
- Training and Growth: Education and training activities hosted or attended in support of the network.
Mandatory 5-Year Evaluation Rules
The official legal framework establishes that all Networks and their member hospitals must be formally evaluated at least every five years after their approval or last review. This periodic check is done by an independent evaluation body appointed by the European Commission to ensure everyone meets high quality standards.
According to the official guidelines, the full evaluation process typically takes between 10 to 12 months from the time the independent evaluation body is appointed until the final reports are officially issued.
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What Does the Evaluation Process Verify?
The independent reviewers assess four core areas to ensure the network is operating successfully under the following official EU guidelines:
The independent reviewers assess four core areas to ensure the network is operating successfully under the following official EU guidelines:
- The fulfillment of the criteria and conditions in Delegated Decision 2014/286/EU.
- The accomplishment of the objectives of Article 12(2) of Directive 2011/24/EU.
- The overall network outcomes, performance, and each member hospital’s individual contribution.
- The achievement of objectives and quality of deliverables produced within the ERNs Specific Grant Agreements (SGAs)
How Are Individual Member Hospitals (HCPs) Evaluated?
When the independent body reviews your specific clinical unit, they look at four clear factors:
When the independent body reviews your specific clinical unit, they look at four clear factors:
- If your team continues to provide highly specialized, top-quality medical care.
- If your clinical team maintains the necessary caseloads, activity levels, and medical experience.
- What specific contributions your hospital team is actively making back to the wider Network.
- The overall value and benefits your hospital gains from being part of the ERN.
Archived Past Processes (Click to expand)
Past evaluations and re-evaluations
The First 5-Year Evaluation (2022/2023)
The European Commission launched its first big evaluation in late 2022 to check the 24 initial ERNs started in 2017. An independent group called IDOM/ACSA (AMEQUIS) ran the checks. Hospitals did self-assessments in early 2023, followed by on-site audits and draft reports in the summer of 2023.
The European Commission launched its first big evaluation in late 2022 to check the 24 initial ERNs started in 2017. An independent group called IDOM/ACSA (AMEQUIS) ran the checks. Hospitals did self-assessments in early 2023, followed by on-site audits and draft reports in the summer of 2023.
The Targeted Re-Evaluation Process (2024/2025)
This process was a follow-up for specific hospitals that received low scores during the first evaluation and had to submit custom Improvement Plans (IPs). The goal was to check if those improvements were actually put into action.
This process was a follow-up for specific hospitals that received low scores during the first evaluation and had to submit custom Improvement Plans (IPs). The goal was to check if those improvements were actually put into action.
- The Timeline: Hospitals completed self-evaluations between December and January, followed by network approvals and official audits throughout February.
- The Platform: The process ran through the online portal at ern-assessment.com.
- Technical Help: For login issues or credential changes, teams emailed helpdesk@ern-evaluation.eu.
- Evaluation Support (NCT Contact): For any guidance regarding the evaluation or re-evaluation process, please reach out directly to Lisa Rist (formerly Gietz) at the Network Coordination Team (NCT), who is in charge of these evaluations.
5-year evaluation: message from the NCT & network performance
The Network Coordination Team (NCT) is incredibly proud to share the final outcomes of ERN-LUNG’s initial 5-Year Evaluation process.
Our Evaluation Highlights:
- All 50 initial members successfully completed their required self-evaluations.
- While 21 healthcare providers (HCPs) initially required an Improvement Plan (IP), 16 resolved their issues directly via the platform’s comment section.
- In the end, only 5 out of 50 HCPs required a formal Improvement Plan.
These outstanding numbers demonstrate how actively involved and dedicated our members are to improving our clinical structures for the future.
Key Achievements & Areas of Success:
- Patient Engagement: ERN-LUNG’s specialized healthcare has been officially recognized as highly patient-tailored.
- Education & Training: In partnership with the European Respiratory Society (ERS), we have deployed extensive training tools, including clinical fellowships, webinars, and e-learning courses through the ERN-Lung Academy.
Looking Ahead & Future Improvements:
To build on this satisfactory result, the NCT is actively working to strengthen our network by focusing on the following initiatives:
To build on this satisfactory result, the NCT is actively working to strengthen our network by focusing on the following initiatives:
- Developing a new assessment tool to better track member activity.
- Enhancing our internal governance and coordination structures.
- Providing stronger hands-on support to help our remaining members implement their Improvement Plans (IPs).
- Addressing regional care differences between Western and Eastern European countries to ensure homogeneous quality standards across the entire network.
We want to extend a massive thank you to all our members who invested their valuable time, capacities, and resources into this intensive evaluation process. Without your tireless efforts, this excellent result would not have been possible.
For more information, please do take a look at the Amequis flyer or other information materials i.e. the Amequis assessment toolkit or assessment manual
Helpful Video resources
For extra guidance, you can watch the helpful step-by-step videos produced by ENDO-ERN, which easily explain the whole evaluation workflow. Additionally, you can review the original European Commission webinar recorded on December 12, 2022, for a deep dive into the official 5-year evaluation process.
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