Title |
European Reference networks for rare diseases: what is the conceptual framework?
|
---|---|
Published in |
Orphanet Journal of Rare Diseases, August 2017
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DOI | 10.1186/s13023-017-0676-3 |
Pubmed ID | |
Authors |
Véronique Héon-Klin |
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. |
X Demographics
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Geographical breakdown
Country | Count | As % |
---|---|---|
Netherlands | 4 | 27% |
Spain | 3 | 20% |
United Kingdom | 1 | 7% |
Ireland | 1 | 7% |
United States | 1 | 7% |
Belgium | 1 | 7% |
France | 1 | 7% |
New Zealand | 1 | 7% |
Unknown | 2 | 13% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 11 | 73% |
Scientists | 2 | 13% |
Practitioners (doctors, other healthcare professionals) | 2 | 13% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 84 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Researcher | 10 | 12% |
Student > Ph. D. Student | 9 | 11% |
Student > Bachelor | 8 | 10% |
Student > Master | 8 | 10% |
Professor | 5 | 6% |
Other | 13 | 15% |
Unknown | 31 | 37% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 16 | 19% |
Nursing and Health Professions | 7 | 8% |
Biochemistry, Genetics and Molecular Biology | 6 | 7% |
Social Sciences | 6 | 7% |
Business, Management and Accounting | 5 | 6% |
Other | 11 | 13% |
Unknown | 33 | 39% |