Educational and knowledge gaps within the European Reference Network on Rare Endocrine Conditions

in Endocrine Connections
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  • 1 V Iotova, Department of Paediatrics, Medical University of Varna, Varna, Bulgaria
  • 2 C Schalin-Jantti, Division of Endocrinology, Department of Medicine, Helsinki University Hospital, Helsinki, FI-00290 , Finland
  • 3 P Bruegman, Leiden, Netherlands
  • 4 M Broesamle, Leiden, Netherlands
  • 5 N Bratina, Department of Pediatrics, University of Ljubljana Faculty of Medicine, Ljubljana, Slovenia
  • 6 V Tillmann, Department of Pediatrics, Institute of Clinical Medicine, , University of Tartu, Tartu, Estonia
  • 7 O Hiort, Department of Paediatrics, University of Lübeck, Lübeck, Germany
  • 8 A Pereira, Endocrinology and Metabolism, Leiden University Medical Center, Leiden, 2300RC, Netherlands

Correspondence: Violeta Iotova, Email:

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 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 availability varied from 0% to 100%. Respondents provided newly diagnosed patients with own material in the national language (81%); referred to advocacy groups (68%), and relevant on-line sources (50%). Respondents believed 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.

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     European Society of Endocrinology

     Society for Endocrinology

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