The Project

The project, launched in February 2018, will achieve its aim by running an e-reporting programme (e-REC), developing a new core endocrine registry that collects a core dataset that also includes a minimum set of core clinical outcomes and, lastly, by signposting participants to high-quality, detailed, disease-specific registries. 

The project builds on the structure that has been created by Endo-ERN but will also be open to all health care professionals beyond this ERN. EuRRECa receives guidance from Expert Working Groups that align with the Main Thematic Groups of Endo-ERN and their guidance will flow through work packages that will review the needs of patients, and parents, comply with the highest ethical standards, evaluate the quality and interoperability of datasets and combine them with patient-centred clinical outcomes. Clear policies that are acceptable to patients, researchers and industry for accessing data for research coupled with widespread dissemination and knowledge exchange through closely affiliated professional endocrine societies, patient support groups and across all the ERNs will ensure that EuRRECa is sustained beyond the current lifetime of the project.