European Registries for Rare Endocrine Conditions (EuRRECa)

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

EuRRECa, 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-centred registries that have been evaluated by EuRRECa.

The EuRRECa project is led by Faisal Ahmed, (WP5) Other Digital Activities 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 (, 487 KB).

Publication

• The current landscape of European registries for rare endocrine conditions Ali, S. R., Bryce, J., Cools, M., Korbonits, M., Beun, J. G., Taruscio, D., … Ahmed, S. F. (2019).
  European journal of endocrinology Volume 180, Issue 1, Pages 89–98. doi:10.1530/EJE-18-0861