ERNs are a groundbreaking new structure that represent a unique opportunity for the innovative use of health data across borders to improve the lives of people living with a rare disease. At the same time, the large majority of people living with a rare disease are willing to share their health data to advance care and research, as long as this is done in a secure manner and they remain in control of the data sharing process.
An integral data strategy should therefore be one of the building blocks of an ERN structure that aims to improve the life of people living with a rare disease through knowledge and data sharing across countries and diseases.
In this context, EURORDIS has published No time to lose: Building a data strategy for the European Reference Networks, outlining EURORDIS' proposal to co-create a comprehensive ERN data strategy that matches the ambition of the Networks, enabling them to address some of the most pressing public health needs of people living with a rare disease or complex condition.
EURORDIS calls on the ERN Board of Member States, the eHealth Network, the European Commission and the Network Coordinators to consider the proposals set out in this paper and take concrete steps to orchestrate a structured multi-stakeholder dialogue on this topic.