European Reference Networks

Work of the ERNs

To review a patient’s diagnosis and treatment the members of an ERN consult, exchange information and share knowledge with other members in their network. Coordinators and other networks leaders convene ‘virtual’ advisory panels of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools.

Treatment of patients with rare or complex diseases

ERNs are not directly accessible to individual patients. However, with a patient's consent and in accordance with the rules of their national health system, a patient’s information can be referred to the relevant ERN member in their country by their healthcare provider.

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How are virtual consultations carried out?

Consultations are done through the Clinical Patient Management System (CPMS). This is a web-based clinical software application where healthcare providers from all over the EU can work together virtually across national borders to diagnose and treat patients with rare, low prevalence and complex diseases in Europe.
Data protection is handled under the EU and national legislations.

Collaboration beyond diagnosis and treatment

  • Development of guidelines, training the sharing of knowledge
  • Facilitation of large clinical studies to improve understanding of diseases
  • Development of new drugs and medical devices by gathering patient data
  • Development of new care models, eHealth solutions and tools.

Establishing an ERN

The European Commission ran a first call for proposals for the development of ERNs in 2016. Further calls for new healthcare providers to join the existing networks, as well as calls for new ERNs will follow over the coming years.

To be recognised by the European Commission an ERN must fulfil the following requirements:

  • Have at least 10 healthcare providers (members of a network) from at least 8 different EU countries
  • Each healthcare provider (member of a network) must be endorsed by their respective EU country
  • All members of a network must have common expertise in a specific field, treatments, diseases or health conditions
  • Submit a proposal for a network (once the call for ERN is launched)
  • Meet the criteria for networks and its members, as provided in the Commission delegated decision on ERNs
  • Gain the approval for membership, which is granted by the Board of Member States based on the independent technical assessment of the proposal.

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