Endocrine Abstracts

The mission of the European Reference Network on Rare Endocrine Conditions (Endo-ERN) is to reduce and ultimately abolish inaequalities in care for patients with rare endocrine conditions across Europe. Endo-ERN provides equality between paediatric and adult patients, and is supported by the European Society of Endocrinology and the European Society of Paediatric Endocrinology. In order to achieve Endo-ERN’s mission and accomplish the concrete objectives the first year was mainly focused on mapping the knowledge base, innovation capacity, and quality of care for each of the main thematic groups, while the second year is now focused on the stepwise execution/ implementation of the planning that was generated in the 1st year. This includes: i) an educational program that fits with the needs of the Endo- ERN members, ii)(in extend of this support) an e-environment that supports all actions of Endo-ERN, iii) Endo-ERN influence on setting guidelines and research agendas, iv) a functional clinical support Operational Helpdesk to democratise access to high-expertise consultations, that also enables linking to registries, and v) a start with an inter-connected diagnostic laboratory network, and setting the standards. The ERN-IT Platform provides the virtual link for the Networks, and includes the public website, the ERN Collaborative Platform, and the Clinical Patient Management system (CPMS). The CPMS has recently been launched to support the cross-border activities of the ERNs enabling virtual consultations by expert boards. To ensure adequate and efficient use of CPMS an operational helpdesks for paediatric and adult endocrinology in Luebeck and Leiden will be instituted. In addition, CPMS will be piloted for a small group of conditions requiring cross-border input and virtual tools for interpreting complex biochemistry. Lastly, CPMS will be linked to EuRRECa (European Registry for Rare Endocrine Conditions) platform.