With approximately 5000 new encounters reported in e-REC since July 2018 across all condition groups covered by EuRRECa and EuRR-Bone, the data that are now available in July 2020 make e-REC a valuable resource for understanding some core features of these rare conditions and their presentation through secondary surveys.
Secondary surveys on e-REC reported cases allow the collection of a brief amount of routine clinical data for quality assurance and for understanding the clinical presentation of the reported condition. No personally identifiable data are collected. The survey questionnaire utilises Webropol, a secure on-line tool that is endorsed and supported by NHS Greater Glasgow & Clyde and NHS Scotland. All information provided will be kept in compliance with the UK Data Protection Act (2018) and General Data Protection Regulation (GDPR 2016/679). These secondary surveys are included within the UK ethics approval for e-REC but participating centres are advised to check if they need any additional local approvals. Following completion of a Data Request Form and a Data Sharing Agreement that will require approval by EuRRECa’s Data Access Committee, the EuRRECa team will develop and run the surveys on behalf of the research teams. The EuRRECa team will have access to the complete dataset and supply the data requested to the research team. These data will only be shared with investigators following the approval of the clinician who is responsible for the patient. Research teams interested in developing secondary surveys should contact EuRRECa at an early stage at firstname.lastname@example.org.
To view the list of surveys visit e-REC surveys