EuRRECa

European Registries for Rare Endocrine Conditions (EuRRECa)

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EuRRECa is aimed at maximising the opportunity for all patients, health care professionals and researchers to participate and use high quality, patient-centered registries for rare endocrine conditions covered within the European Reference Network on Rare Endocrine Conditions (Endo-ERN).

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 objective markers of clinical outcome and, lastly, by signposting participants to high-quality, detailed, disease-specific and patient centered registries that have been evaluated by EuRRECa.

The EuRRECa project is led by Faisal Ahmed, WP2 e-Health & ICT chair within Endo-ERN and will be heavily linked to the core activities of Endo-ERN

If you want to know more about the project and its governing structure, visit the website, or view the EuRRECa leaflet.