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Orphanet Journal of Rare Diseases
Published in: Orphanet Journal of Rare Diseases 1/2017

Open Access 01-12-2017 | Position statement

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

Author: Véronique Héon-Klin

Published in: Orphanet Journal of Rare Diseases | Issue 1/2017

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Abstract

With the Cross-Border Healthcare Directive (2011/24/EU) a mandatory framework was established to foster cooperation on a voluntary basis, within European Reference Networks (ERNs). These networks are composed of centres and healthcare providers. The exchange of knowledge is a central issue in this context. A detailed literature survey was carried out to determine the most important factors affecting information and knowledge exchange, as well as learning, in networks and how this can be supported. New communication technologies are identified as key tools for the European Reference Networks (ERN). This study recommends the elaboration of a systematic knowledge use and knowledge generation plan. The data of this study suggests that the future ERNs will mediate the adoption of the digitised and networked information society in medical practice.
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Metadata
Title
European Reference networks for rare diseases: what is the conceptual framework?
Author
Véronique Héon-Klin
Publication date
01-12-2017
Publisher
BioMed Central
Published in
Orphanet Journal of Rare Diseases / Issue 1/2017
Electronic ISSN: 1750-1172
DOI
https://doi.org/10.1186/s13023-017-0676-3

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