European Reference networks for rare diseases: what is the conceptual framework?
نویسنده
چکیده
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.
منابع مشابه
Developing the Conceptual and Methodological Framework for Discursive-institutional Analysis of Coastal Exclusive Space Production: with Special Reference to Critical Realism Perspective
Because of the limited capacity of coastal lands and conflicting interests among stakeholders for coastal resources, there are intensifying pressures to retain and provide more public access to the coast. Coastal gated communities have been developed increasingly in the middle shoreline of Caspian Sea in North of Iran. They are kind of exclusive space production as they restrict public access t...
متن کاملThe context for the thematic grouping of rare diseases to facilitate the establishment of European Reference Networks
BACKGROUND In the past few years there has been a political imperative driving the creation of European Reference Networks as these are considered a promising way to achieve equity in access to the most up to date medical care across Europe. The right to equity in the access to care was established by the directive of the European Parliament and of the Council on the application of patients' ri...
متن کاملExamining the difficulty pathways of can-do statements from a localized version of the CEFR
The Japanese adaptation of the Common European Framework of Reference (CEFR-J) is a tailored version of the Common European Framework of Reference (CEFR), designed to better meet the needs of Japanese learners of English. The CEFR-J, like the CEFR, uses illustrative descriptors known as can-do statements, that describe achievement goals for five skills (listening, reading, spoken ...
متن کاملMilestones in lymphangioleiomyomatosis research.
L ymphangioleiomyomatosis (LAM), a slowly progressive disease affecting mostly young and middle-aged females [1], is one of the few orphan lung diseases that has attracted major attention in recent years from both clinicians and researchers [2], with rapidly evolving progress. With an estimated prevalence of one in 400,000 adult females aged 20–69 yrs for the sporadic form [3] and ,30% of patie...
متن کاملEuropean Reference Networks: developing a EUCERD opinion
The establishment of European Reference Networks as laid out under the Cross Border Health Care Directive (CBHCD) is a major opportunity for the rare disease community. There have been many successful networks for rare disease groups, but their establishment has been ad hoc and funding streams variable. Sustainability has been a major challenge. Although the assessment of the quality of these n...
متن کامل