Objective: The European Reference Network on Rare Endocrine Conditions (Endo-ERN), operational since 2017, consists of 71 health care providers (HCPs) in 19 EU member states. Our objective was to... Show moreObjective: The European Reference Network on Rare Endocrine Conditions (Endo-ERN), operational since 2017, consists of 71 health care providers (HCPs) in 19 EU member states. Our objective was to assess education and knowledge on rare endocrine conditions.Design and methods: A survey was developed and sent through the DIGIT-EUROSURVEY system to all Endo-ERN HCPs.Results: Response rate was 55% (n = 146), 95% physicians, 58% > 20 years of experience, 96% academics. Largest knowledge gaps were reported for the transition and neonatal ages, and for the GPs. Less than 50% of HCPs had structured educational rare diseases (RD) plans, while 86% used RD specific guidelines. HCPs would share educational materials within Endo-ERN (74%), and participate in an accreditation model (85%). E-learning portals of the endocrine scientific societies used 58 % (ESPE) and 64% (ESE). Most participants (90%) regarded Endo-ERN coordinated educational activities (annual meetings slots, webinars, etc.) as highly important and supported a common educational platform. Social media was perceived as important for educating patients (86%) but not for physicians (36%). Seventy-five % had developed patient education materials; only 31% had specific children's materials, and by-country avail ability varied from 0 to 100%. Respondents provided newly diagnosed patients with their own material in the national language (81%); referred to advocacy groups (68%), and relevant online sources (50%). Respondents believed the European Commission should fund education through Endo-ERN.Conclusion: Identified knowledge gaps in rare endocrine disorders set the basis for fast catch-up through collaboration, alignment with patients' needs, and further development of existing and newly developed educational resources. Show less
Developmental dyslexia may involve deficits in functional connectivity across widespread brain networks that enable fluent reading. We investigated the large-scale organization of... Show moreDevelopmental dyslexia may involve deficits in functional connectivity across widespread brain networks that enable fluent reading. We investigated the large-scale organization of electroencephalography (EEG) functional networks at rest in 28 dyslexics and 36 typically reading adults. For each frequency band (delta, theta alpha and beta), we assessed functional connectivity strength with the phase lag index (PLI). Network topology was examined using minimum spanning tree (MST) graphs derived from the functional connectivity matrices. We found significant group differences in the alpha band (8–13 Hz). The graph analysis indicated more interconnected nodes, in dyslexics compared to typical readers. The graph metrics were significantly correlated with age in dyslexics but not in typical readers, which may indicate more heterogeneity in maturation of brain networks in dyslexics. The present findings support the involvement of alpha oscillations in higher cognition and the sensitivity of graph metrics to characterize functional networks in adult dyslexia. Finally, the current results extend our previous findings on children. Show less
Schipper, L.J. de; Hafkemeijer, A.; Grond, J. van der; Marinus, J.; Henselmans, J.M.L.; Hilten, J.J. van 2018
