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Results of the Public consultation on the implementation of European Reference Networks

An online survey on the potential scope of European Reference Networks and the criteria to join them

August 15, 2013

Public consultation on the implementation of European Reference Networks (ERN)

The European Commission promoted a consultation to seek the views of interested parties on the potential scope of European Reference Networks, and the criteria for healthcare providers wishing to join them. The consultation consisted of an online survey which was open for submission for 12 weeks, between November 2012 and February 2013. The results show a wide consensus in the main aspects to consider among the contributors.

The main added value of the European Reference Networks (ERNs) and of the Centres of Expertise is the improvement of access to both diagnosis and high-quality, accessible and cost-effective healthcare for patients who have a medical condition requiring a particular concentration of expertise or resources. It is particularly important in medical domains where expertise is rare. European Reference Networks could also be focal points for medical training and research, information dissemination and evaluation, especially for rare diseases. ENERCA is a pioneering experience in the field of rare anaemias aligned with the philosophy of the ERNs.

The Commission received 138 contributions to the consultation. The main contributors were academic/public health and healthcare specialised organisations (23,91%), health professionals’ organisations (21,01%), patent organizations/associations (18,31%) and healthcare providers (16,2%).

They were asked to provide their view on the relevance of possible criteria that the condition, disease or technique should fulfil to be considered for inclusion in the scope of the future ERN. Respondents considered all proposed criteria relevant, on average 125 respondents (90,58%) saying each was 'very important' or 'important'. The criterion “need of highly specialised healthcare” received the most support with 130 respondents (94,21%) saying it was either 'very important' or 'important'.

A majority (89, or 64,49%) of respondents thought that there was no need for additional criteria or option to address the issue. 88 (63,77%) respondents noted that the diseases or group of diseases to be addressed by the future ERN would need to be prioritised according to the proposed criteria.

A detailed report on the consultation results is available in the Public health website of the European Commission.

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