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 an e-reporting programme (e-REC) and a core registry that collects a common dataset and clinician and patient reported outcomes. The project will also develop a list of affiliate detailed disease registries that are approved for data sharing. EuRRECa works closely with Endo-ERN, ESPE and ESE and the platforms it has developed have also been adopted by ERN-BOND and its related registry, EuRR-Bone.
Since April 2020, the e-REC platform is also being used to capture the occurrence of a new COVID19 infection in a patient with an existing endocrine or bone condition. The platform remains open for any centre that would like to participate. For details visit the COVID-19/e-REC webpage
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).
Ali SR, Bryce J, Tan LE, Hiort O, Pereira AM, van den Akker ELT, Appelman-Dijkstra NM, Bertherat J, Cools M, Dekkers OM, Kodra Y, Persani L, Smyth A, Smythe C, Taruscio D, Ahmed SF. The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes. Int J Environ Res Public Health. 2020 Nov 25;17(23):8743.
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.