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ERN evaluation or AMEQUIS
This is part of the AMEQUIS framework (Assessment, Monitoring, Evaluation and Quality Improvement System), which aims to ensure that ERNs remain responsive to the needs of the rare disease patient community, deliver on their objectives, and improve their performance over time.
BACKGROUND & INFORMATION
In accordance with the Implementing Decision 2014/287/EU, an independent evaluation body was appointed to evaluate the European Reference Networks (ERNs) and their members
5 years after their initial approval, in order to determine the worth and significance of the work produced by the networks.
Specifically, the evaluation set out to assess:
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Whether ERNs and their members (HCPs) continue to fulfil the requirements set out in the EU law
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To what degree the ERNs have achieved the original objectives set out in their application
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The outcomes and performance of the ERN and the contribution of each HCP member
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Achievement of the objectives and quality of the deliverables produced under the ERN grants
... in order to judge the following:
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Structure: How is the ERN covering the areas it stated it would (including geographical, diseases and conditions, and patient population).
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Maturity: At what stage of development is the network regarding its purpose, governance, leadership, learning and sustainability; level of integration into national health systems.
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Activity: To what degree has the ERN completed the activities it planned to perform; scale and ambition of the achievements.
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Impact: What has been the value added to the patients' experience, both receiving services with each member, and their pathway through the network; impact locally, use of ERN tools
ERNICA EVALUATION RESULTS
We are happy to report that ERNICA as a network received a SATISFACTORY final evaluation result, with no need for an improvement plan.
Grand total score: 101/104 (97,12%)
Score for core measurable elements: 59/60 (98,33%)
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