Resources:
Since their inception in 2017, European Reference Networks (ERNs) have started building-up the evidence base for the natural history of rare diseases, starting with ERN registries and disease specific health outcomes. However, the full potential of ERNs can only be realised if they are able to combine and link different types of data from different sources, for multiple uses.
Coordinator of the European Reference Network for Hereditary Metabolic Disorders (MetabERN)
Director-General Healthcare, National Institute for Health and Disability Insurance (INAMI-RIZIV)
Director for Health Systems, medical products and innovation, DG SANTE, European Commission
ERN-EYE Coordinator and Chair of the ERN Coordinators Group
Coordinator of the European Rare Kidney Diseases Reference Network (ERKNet)
Director for Health Systems, medical products and innovation, DG SANTE, European Commission
Director of Orphanet, French National Institute of Health and Medical Research (INSERM)
Coordinator of the European Rare Kidney Diseases Reference Network (ERKNet)
ERN and Healthcare Director, EURORDIS – Rare Disease Europe
Pharmacoeconomist, Finnish Medicines Agency (FIMEA)
Project Director at Sitra and Coordinator of the Joint Action Towards the European Health Data Space (TEHDAS)
FIPRA Special Advisor
Chief Pharmacist, National Centre for Pharmacoeconomic Evaluations (NCPE) (Ireland)
There is a need to build a long-term vision and a holistic data strategy for ERNs, which is connected with the wider policy agenda and aligned with the proposed European Health Data Space. Such a data strategy should consider previous and existing initiatives and be co-created by a multi-stakeholder group, including ERN members and the Board of Member States, representatives from the Ministries of Health, patient organisations, hospital managers, the European Commission and industry.
Public Webinar: From Policy to Practice: EHDS Implementation to Support Better Real-World Evidence for HTA/Payers
RWE4Decisions Symposium: Developing Real-World Evidence to Deliver Innovation in HTA
Public Webinar: HTA/Payer Collaboration in the Nordics: The Role of Real-World Evidence
