EuRRECa (European Registries for Rare Endocrine Conditions) which is funded by the European Union’s Health Programme is aimed at maximising the opportunity for patients, health care professionals and researchers to participate and use high-quality registries. The project, launched in 2018, includes two registries, an e-reporting programme (e-REC) and a core registry that collects common and condition-specific datasets. EuRRECa works closely with Endo-ERN, ESPE and ESE and the platforms it has developed are also used by EuRR-Bone, the registry project that supports ERN-BOND.
The Core Registry and e-REC databases have now transferred to Leiden. Click here for the new access links.
Patient Reported Outcome Measures (PROMs) Survey – First round closed
The EuRR-Bone and EuRRECa registries are performing a survey of patients and clinicians in the bone and endocrine field to help decide which Patient Reported Outcome Measures (PROMs) can be used as generic tools in the registries. The first round of this survey is now closed and the results will be published soon. Respondents will be invited to participate in a second round.
EuRRECa/EuRR-Bone Platform Drop-in sessions
Come along to one of our drop-in sessions for a live walkthrough of the e-REC and Core Registry platforms. Calendar and Zoom link.
Ali SR, Bryce J, Smythe C, Hytiris M, Priego AL, Appelman-Dijkstra NM, Ahmed SF. Supporting international networks through platforms for standardised data collection-the European Registries for Rare Endocrine Conditions (EuRRECa) model. Endocrine, 71, 555–560 (2021).
Salma Rashid Ali, Jillian Bryce, Yllka Kodra, Domenica Taruscio, Luca Persani, Syed Faisal Ahmed. The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry. Int. J. Environ. Res. Public Health 18(22), 11968 (2021).
This website is part of the project ‘777215 / EuRRECa’ which have received funding from the European Union’s Health Programme (2014-2020) and is part of the project ‘946831 / EuRR-Bone’ which has received funding from the European Union’s Health Programme (2020-2023). The content of this website represents the views of the author only and is his/her sole responsibility; it can not be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.