No time to lose: Building a data strategy for the European Reference Networks - A EURORDIS contribution


No time to lose: Building a data strategy for the European Reference Networks is a EURORDIS contribution published to inform the debate on a much-needed data strategy for the European Reference Networks (ERNs).

Through this paper, our aim is to trigger a strategic discussion on health data and ERNs that is long overdue.

These Networks 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.

To fulfil this ambition, ERNs require strategic direction, a long-term vision and policy alignment with the wider European health data ecosystem.

This paper outlines 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.


We propose to start the conversation by setting up a multi-stakeholder steering committee that would address the following key questions:

  1. What problems or questions do ERNs need to address that require the innovative use of health data?
  2. What specific data is required to address the problems or questions that have been identified? Where is it stored? Is there a need to collect new data or can we reuse data sets already collected?
  3. Are the data sets ready to be used at scale for data analysis and modelling? Do they meet the requirements in terms of quality, volume, availability and other relevant criteria?
  4. Are the proposed uses of patients’ data ethical and would they raise any regulatory concerns?
  5. What data sharing scenarios (use cases) should be prioritised?
  6. What are the technological and infrastructure requirements to support the prioritised scenarios?

In parallel, this multi-stakeholder steering committee should define an implementation framework fit for purpose.

While we acknowledge that all 24 ERNs are different and might have different data needs, as well as different data readiness levels, we strongly believe that they will all benefit from a common implementation data infrastructure that can aggregate demand, provide project support and build common methodologies to support implementation, allowing for a certain degree of customisation when required. 



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. It is time to recognise health data as a priority action for the ERNs and dedicate the resources and political push required to build a long-term vision that can effectively support the work of the Networks for the years to come.

La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases