ERN

“ERNs will provide for the first time a unique opportunity to work together in healthcare. The main goal is to support cooperation in healthcare where expertise is scarce and to facilitate access to high-quality diagnosis and medical care including the European added value by working cross border in this field. Proposed networks have to define how they want to communicate with each other (i.e. access to shared communication tools and assets to support e-health and teleconsultations) and what services they will offer such as sharing diagnostic tools etc. between collaborators within a single ERN.” (European Commission) 

What is an ERN?

“A network connecting health care providers and centres of expertise of highly specialised healthcare, for the purpose of improving access to diagnosis, treatment and the provision of high-quality healthcare for patients with conditions requiring a particular concentration of resources or expertise no matter where they are in Europe. For clinicians who network widely already, the ERN will represent the formalisation of their networking structures/practices in highly specialized healthcare. For those without specialist networking communities at present, ERNs will promote expertise and support health care providers in order to bring local, regional and national provision of healthcare closer to the patients.” (European Commission FAQs)

The ERN Project

  • at least 10 Healthcare Providers from 8 EU countries
  • Create  21 ERNs on Rare Diseases (RD grouping list here– Expert Group on RD of the European Commission, June 2015), including “Rare Multisystemic Vascular Diseases”
  • ERNs gathering the best EU experts on Rare Diseases to face the challenges of rarity, benefit from EU cooperation, represent a home for every Rare Diseases Patient in Europe

Aims 

  • Link and pool existing highly specialised healthcare providers across the EU

– Institutionalize EU experts cooperation

– Concrete projects: communication, telemedicine, teaching, research, information dissemination and evaluation

– Overcome the challenges of rarity

  • Facilitate access to diagnosis and treatment in rare or low prevalence complex diseases or conditions

– Centralising: knowledge, experience, medical research, training, resources

– Reduce inequalities of treatment within the EU

 

Legislative background

Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare

  • ERN to pursue at least 3 of the following 8 objectives (Article 12)
(a) to help realise the potential of European cooperation regarding highly specialised healthcare for patients and for healthcare systems by exploiting innovations in medical science and health technologies;

(b) to contribute to the pooling of knowledge regarding sickness prevention;

(c) to facilitate improvements in diagnosis and the delivery of high-quality, accessible and cost effective healthcare for all patients with a medical condition requiring a particular concentration of expertise in medical domains where expertise is rare;

(d) to maximise the cost-effective use of resources by concentrating them where appropriate;
(e) to reinforce research, epidemiological surveillance like registries and provide training for health professionals;

(f) to facilitate mobility of expertise, virtually or physically, and to develop, share and spread information, knowledge and best practice and to foster developments of the diagnosis and treatment of rare diseases, within and outside the networks;

(g) to encourage the development of quality and safety benchmarks and to help develop and spread best practice within and outside the network;

(h) to help Member States with an insufficient number of patients with a particular medical condition or lacking technology or expertise to provide highly specialised services of high quality.

ERN Criteria are defined in the secondary legislation:

Commission Implementing Decision

Commission Delegated Decision

More information and details on Criteria : presentation on ERNs

 

Useful links 

ERN Call ERN – HP-ERN-2016   and call document

ERN Assessment Manual and Application Official documents (HCP Application, Self-assessment forms, Operational Criteria) for Applicants (revised version, April): here 

 

More information

European Commission ERNs policy and  info on calls

Board of Member States ERNs implementation strategy (January 2016)

European Commission FAQ on ERNs

RD Action Informal Q&A on ERNs

EURORDIS Q&A on ERNs 

European Commission Info Day on ERNs