European Reference networks for rare diseases: what is the conceptual framework?

Table 2 Relevant criteria for European Reference Networks (ERN)

Themes in the Operational Criteria
	Network	Healthcare Providers
Themes	• Establishment of a European Reference Network • Highly Specialised Healthcare • Governance and Coordination • Patient Care • Multidisciplinary Approach • Good Practice, Outcome Measures, and Quality Control • Contribution to Research • Continuous Education, Training, and Development • Networking and Collaboration	General Criteria: • Patient Empowerment and Patient-Centred Care • Organisation, Management, andBusiness Continuity • Research, Education and Training • Expertise, Information Systems, and e-Health Tools • Quality and Safety Specific Criteria: • Competence, Experience andOutcomes of Care • Human Resources • Organisation of Patient Care • Facilities and Equipment
Assessment	Each criterion is rated once for the overall Network.	Each criterion is rated individually for each Healthcare Provider within the Network.

(Published in the ERN Assessment Manual for Applicants and dowloaded on the 6th of march 2017 http://ec.europa.eu/research/participants/data/ref/other_eu_prog/hp/guide/pse/hp-asses-manual-ern-descr-process_en.pdf)
The most important criteria for knowledge and information sharing from the COMMISSION DELEGATED DECISION of 10 March 2014 setting out criteria and conditions that European Reference Networks and healthcare providers wishing to join a European Reference Network must fulfil (2014/286/EU)
(4) To fulfil the requirement set out in point (iii) of Article 12(4)(a) of Directive 2011/24/EU (‘offer a high level of expertise and have the capacity to produce good practice guidelines and to implement outcome measures and quality control’), the Networks must:
(a) exchange, gather and disseminate knowledge, evidence and expertise within and outsidethe Network, in particular on the different alternatives, therapeutic options and best practices with regard to the provision of services and the treatments available for each particular disease or condition;

ISSN: 1750-1172