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European Reference Networks (ERNs)

After a whole year of tangible work, we need to take stock of the ERNs :

  • Virtual Patient Care:

Since November 2017, ERNs now all have access to a dedicated Clinical Patient Management System (CPMS), through which are provided virtual, cross-expert and cross-border consultations for real patients whose cases warrant the pooling of knowledge across the ERN community. Virtual case review has been acknowledged as being the heart of the ERNs.

  • Data Integration and Interoperability:

This question of data interoperability and ‘linkability’ will be an important focus of five ERN-specific grants awarded last year through the European Public Health Programme. A Call had been launched, to provide ‘support for new registries’ based upon ERNs.

  • Financial Support for ERNs:

Importantly, the European Commission continues to provide non-competitive funding opportunities to all of the Networks, essential ERNs to operate. Very recently, the ERNs submitted applications for their second year of coordination funding, and the 2018 Public Health Programme has earemarked € 13.8 Million to ERNs for the next three years.

  • Governance Structures of the ERN Coordinators Group :

During 2017, the governance model of the 24 ERNs was developed to ensure collaboration and avoid duplication of efforts in many key areas of activity. The ERN Coordinators Group (ECG) was formed. Several workshops were organized, focusing on data sharing, research, ethics, cross border healthcare, guidelines or education.

  • RD-ACTION Support

Following the workshop on ERNs and Clinical Practice Guidelines, several documents (including Recommended Practices relating to Clinical Practice Guideline activities) are in preparation, through the partnership between the RD-ACTION organisers and the ERN Working Group on Guidelines, Education and Training in particular. Two more workshops of particular relevance to ERNs will be organised : one on Integrated, holistic care for rare disorders (via the INNOVCare project), and one on ERN added-value to clinical research. Meanwhile, the activities of EURORDIS continue to foster engagement of patients via the ePAGs (European Patient Advisory groups), which now number around 150.

  • Future Expansion of ERNs

An important topic for 2018 will be how to manage the expansion of the 24 ERNs, in terms of integrating new members and also agreeing how to bestow the status of ‘affiliated’ partners.  The ERNs’ goal is to recruit new members in a logical, strategic way, to ensure a comprehensive coverage of all rare conditions, and also to maximise geographical coverage by encouraging all eligible countries to participate.

(©orphanews 2018.01.31)