EuRRECa is aimed at maximising the opportunity for all patients, healthcare 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 2018, includes two registries, an e-reporting programme (e-REC) and a Core Registry that collects common and condition-specific datasets. Endo-ERN members submit their patient numbers via e-REC as part of the Continuous Monitoring Exercise.
Together with EuRR-Bone, launched in 2020, EuRRECa shares the registries and aims to maximise the opportunity for all patients, healthcare professionals and researchers by signposting participants to high quality, detailed, condition-specific and patient-centred registries for rare endocrine and bone/mineral conditions.
The EuRRECa project is led by co-chairs Faisal Ahmed and Natasha Appleman-Dijkstra (WP5) Registries, data management and analysis within Endo-ERN and will be heavily linked to the core activities of Endo-ERN.