Educational and knowledge gaps within the European reference network on rare endocrine conditions.

ABSTRACT:

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 (8

SUBMITTER: Iotova V 

PROVIDER: S-EPMC7923050 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature