Please use this identifier to cite or link to this item: http://hdl.handle.net/2445/185021
Title: European expert network on rare communicable diseases and other rare diseases linked to mobility and globalisation focused on ealth care provision (EURaDMoG): a feasibility study.
Author: Requena Méndez, Ana
Bisoffi, Zeno
Vives Corrons, Joan Lluís
Gascon, Joaquim
Plasència, Antoni
Keywords: Comunicació en medicina
Malalties rares
Communication in medicine
Rare diseases
Issue Date: 2020
Publisher: BioMed Central
Abstract: INTRODUCTION NlmCategory: BACKGROUND content: In the current mobility and globalization context, there is a growing need to identify potential changes on the pattern of diseases in the European Union (EU)/European Economic Area (EEA) and provide accurate diagnosis and treatment for the population. The pattern of rare communicable diseases that can affect people returning to EU/EEA from travel abroad, visiting EU/EEA or establishing in the EU/EEA is of special relevance. The objective of this manuscript is to give an overview about the EURaDMoG study and discuss the feasibility of establishing a European network on rare communicable diseases and other rare conditions linked to mobility and globalization. - Label: METHODS NlmCategory: METHODS content: We undertook a three-steps process where we first conducted a narrative review to estimate the prevalence and incidence and to list rare communicable and non-communicable diseases linked to mobility and globalization in the EU/EEA; second, we organized an international consultation workshop with experts in the diseases previously selected; and finally, the feasibility study analysed how successful a European expert network on rare diseases linked to mobility and globalization focused on health care provision would be, accounting for different operational and also sustainability criteria. - Label: RESULTS NlmCategory: RESULTS content: "First, considering the areas or topics that the network should cover, it was concluded that communicable and non-communicable rare diseases linked to mobility and globalization should be differentiated. Second, since all non-communicable rare diseases linked to mobility and globalization identified are already covered by different European Reference Networks (ERNs), there is no need for them to be included in a new European network. Three scenarios were considered for establishing a potential European network for rare communicable diseases linked to Mobility and Globalisation with a focus on Health Care provision: 1) To maintain the current situation \"Status Quo\" scenario; 2) to create a specific European expert network (EEN) on rare communicable diseases linked to mobility and globalisation; 3) to develop a new ERN on communicable rare diseases linked to mobility and globalisation." - Label: CONCLUSIONS NlmCategory: CONCLUSIONS content: Since the focus is the provision of health care, an ERN could have the potential to better boost the quality of care being facilitated by technological tools and online platforms that permit the safe and ethically acceptable exchange of data. However, this potential new network should not eclipse current existing networks and they should be complementary.
Note: Reproducció del document publicat a: http://dx.doi.org/10.1186/s13023-020-01534-1
It is part of: Orphanet Journal of Rare Diseases, 2020, vol. 15
URI: http://hdl.handle.net/2445/185021
Related resource: http://dx.doi.org/10.1186/s13023-020-01534-1
ISSN: 1750-1172
Appears in Collections:Articles publicats en revistes (ISGlobal)

Files in This Item:
File Description SizeFormat 
Requena_A_Orphanet_J_Rare_Dis_2020.pdf572.61 kBAdobe PDFView/Open


This item is licensed under a Creative Commons License Creative Commons