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.
The EMA has published a draft Guideline on registry-based studies for consultation until 31 December 2020: Link to the Guideline.
This guideline was created based on the comments raised during the public consultation on the document entitled Discussion paper: Use of patient disease registries for regulatory purposes – methodological and operational considerations that took place between November 2018 and June 2019.
This website is part of the project ‘777215 / EuRRECa’ and ‘946831 / EuRR-Bone’ which have received funding from the European Union’s Health Programme (2014-2020). 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.