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

Abstract

Introduction 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. Methods 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. Results 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. Conclusions 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.

Needs and Experiences With Health Care Providers of Adult Rare Disease Patients and Caregivers of People With Rare Diseases: Protocol for a Qualitative Study

“…In Europe, rare diseases are defined as diseases with a prevalence of less than 5 per 10,000 people in the population [ 1 ]. While individual disease incidence is small, the collective number of all types of rare diseases is large [ 2 ].…”

Screening of Patient Impairments in an Outpatient Clinic for Suspected Rare Diseases—A Cross-Sectional Study

“…Many rare diseases have a genetic background, but there are also many other rare diseases such as autoimmune and infectious diseases with chronic sequelae. Lists of orphan diseases include around 5000–8000 diagnoses [ 3 ].…”

Carer reported experiences: Supporting someone with a rare disease

“…Rare diseases are collectively common and affect a significant proportion of the population (Ferreira, 2019), representing a major public health issue. A rare disease is defined in Europe as affecting less than 5 in 10,000 individuals (Requena‐Méndez et al., 2020), and there are at present estimated to be between 6,000 and 8,000 rare diseases making their cumulative prevalence common (Putzeist et al., 2013). However, inconsistences in how rare diseases are defined leads to impaired diagnosis, challenges researching rare diseases, and treatment (Haendel et al., 2020).…”