Baseline survey on the scope of education and training for rare bone and mineral diseases

Survey findings from 69 ERN BOND and Endo-ERN health care providers, main stakeholders in advancing the care of patients with rare bone and mineral disorders, reveal the need to develop an accredited, structured, harmonised and accessible cross-border Educational and Training programme in this field.

There are disparities in Education and Training (ET) in Rare Bone and Mineral Disorders (RBMDs) among European Member States (MSs). Health care providers (HCPs) from two European Reference Networks play pivotal roles in advancing RBMDs care: ERN BOND for rare bone diseases, and Endo-ERN for rare endocrine diseases. The purpose of this study was to map the ET landscape and identify gaps and unmet needs in this field.

A 56-questions online survey developed by ERN BOND addressed educational activities, undergraduate and postgraduate ET, competence assessment, and future perspectives in RBMDs. Dissemination was via SurveyMonkey to all ERN BOND (38) and Endo-ERN (78) HCPs.

Collectively, 69 HCPs (60%) representing 20 MSs responded. Most worked in academic institutions, were aged >50 yrs, and had >20 yrs experience. Educational tools most frequently used were PubMed Central searches, phone/email a colleague and attendance of "Meet the expert" sessions and RBMD-related courses. RBMDs were in the undergraduate curriculum of >60% of HCPs. The most popular postgraduate educational tools were formal lectures and learning on the job. Major gaps were specialist ET, and unmet needs were mainly for training workshops/seminars. Nearly all supported the creation of a common educational platform to develop a cross-border educational programme.

Findings from this survey among two ERNs representing the main stakeholders in the excellence of care for patients with RBMDs highlight the need for an accredited, structured, harmonized and accessible cross-border ET programme in this field and inform future initiatives for its development.