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.

Patient Reported Outcome Measures (PROMs) Survey – launched 3rd Dec 2021

The EuRR-Bone and EuRRECa registries are performing a survey of patients and clinicians in the bone and endocrine field on their views on Patient Reported Outcome Measures (PROMs).  The results of this survey will help to decide which PROMs can be used as generic tools in the registries. We invite you to participate in the Patient survey or the Health Care Provider survey. The surveys will be open until January 31 2022.

Important notice: Database Transfer – Planned Downtime

The EuRRECa/EuRR-Bone databases are transferring from Glasgow to Leiden. e-REC and the Core Registry will therefore be off-line. Users will be notified when the registries are available again after the transfer.

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

EuRRECa newsletter July 2021

Recent Publications

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.

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