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In the registries webinar, we explored how the industry can engage with patients to support the formation of strong patient organizations and how that step is important. Organized patients and families enable patient engagement to be formal, sustained, and evolving towards a real long-term partnership in the creation of federate patient registries. Finally, we will outline effective strategies for industry collaboration with the European Reference Network (ERN) registries funded by the European Commission under HP-PJ-2019.
Introduction and EU IPPF’s experience with registries for Pulmonary FIbrosis
Founder and Managing Partner, admedicum
How to engage patients and build strong, international patient communities
Advisor in Rare Diseases registries, RareURN
Industry strategies for planning European Registries, and RWD Study platforms
George will highlight the role of technology and how a Patient Registry with federated structure can provide data access to multiple stakeholders while keeping up to data protection and compliance gold standards.