The EuRRECa project launched in 2018, includes e-REC (e-reporting for rare conditions) which has been fully operational for over a year and is approved by the National Ethics Service and Information Governance authorities in the UK. Participating centres are advised to check if they require local approvals at their own centre. No identifiable or partially identifiable personal information is captured in e-REC and individual patient consent is not required. The reported data are stored on a secure server in the University of Glasgow and all information provided is kept in compliance with the UK Data Protection Act (2018) and General Data Protection Regulation (GDPR 2016/679).
Centres that require local approval to add data to the EuRRECa Registries can use these Data Sharing Agreement templates: