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European expert network on rare communicable diseases and other rare diseases linked to mobility and globalisation focused on health care provision (EURaDMoG): a feasibility study

Authors
  • Requena-Méndez, Ana1, 2
  • Bisoffi, Zeno3, 4
  • Vives-Corrons, Joan-Lluis5
  • Gascon, Joaquim1
  • Plasència, Antoni1
  • 1 Barcelona Institute for Global Health (Hospital Clínic- Universitat de Barcelona), Barcelona, Spain , Barcelona (Spain)
  • 2 Karolinska Institutet, Solna, Stockholm, 17176, Sweden , Stockholm (Sweden)
  • 3 IRCCS Sacro Cuore Don Calabria Hospital, Negrar (Verona), Italy , Negrar (Verona) (Italy)
  • 4 University of Verona, Verona, Italy , Verona (Italy)
  • 5 Institute for Leukaemia Research Josep Carreras (IJC), Badalona (Barcelona), Spain , Badalona (Barcelona) (Spain)
Type
Published Article
Journal
Orphanet Journal of Rare Diseases
Publisher
Springer (Biomed Central Ltd.)
Publication Date
Oct 16, 2020
Volume
15
Issue
1
Identifiers
DOI: 10.1186/s13023-020-01534-1
Source
Springer Nature
Keywords
License
Green

Abstract

IntroductionIn 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.MethodsWe 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.ResultsFirst, 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.ConclusionsSince 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.

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