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.
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.
PROGRAMME
A discussion moderated by Sheela Upadhyaya, FIPRA Special Advisor
16h00 – 16h15 Welcoming remarks and Opening Statement
- Prof. Maurizio Scarpa, Coordinator of the European Reference Network for Hereditary Metabolic Disorders (MetabERN)
- Brieuc Van Damme, Director-General Healthcare, National Institute for Health and Disability Insurance (INAMI-RIZIV)
16h15 – 16h25 Setting the scene: What are the ERNs’ health data needs and how can the European Health Data Space support the realisation of this agenda?
- Dr. Andrzej Rys, Director for Health Systems, medical products and innovation, DG SANTE, European Commission
- Prof. Hélène Dollfus, ERN-EYE Coordinator and Chair of the ERN Coordinators Group
- Prof. Franz Schaefer, Coordinator of the European Rare Kidney Diseases Reference Network (ERKNet)
16h25 – 17h25 Panel discussion: How to deliver a health data strategy for ERNs?
- Dr. Andrzej Rys, Director for Health Systems, medical products and innovation, DG SANTE, European Commission
- Dr. Ana Rath, Director of Orphanet, French National Institute of Health and Medical Research (INSERM)
- Prof. Franz Schaefer, Coordinator of the European Rare Kidney Diseases Reference Network (ERKNet)
- Inés Hernando, ERN and Healthcare Director, EURORDIS – Rare Disease Europe
- Piia Rannanheimo, Pharmacoeconomist, Finnish Medicines Agency (FIMEA)
- Markus Kalliola, Project Director at Sitra and Coordinator of the Joint Action Towards the European Health Data Space (TEHDAS)
Including Q&A with audience
17h25 – 17h30 Closing remarks and next steps by Sheela Upadhyaya, FIPRA Special Advisor
