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-centred 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 .
- 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