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 the Data Access Committee, the team will develop and run the surveys on behalf of the research teams and will supply the data requested to the research team. 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 in EuRRECa visit the EuRRECa website. The secondary surveys in EuRR-Bone are listed below when approved by the Data Access Committee.
|Osteogenesis Imperfecta||Wolfgang Hogler, Ralf Oheim, Natasha Appelman-Dijkstra, Ana Priego Zurita, Faisal Ahmed||Awaiting approval|
|FD/MAS||Natasha Appelman-Dijkstra, Ana Priego Zurita, Roland Chapurlat, Kassim Javaid, Diana Ovarejo, Danielle Tessaris, Lothar Seefried, Faisal Ahmed||Under development|
|COVID-19 Bone||Natasha Appelman-Dijkstra, Ana Priego Zurita, Jillian Bryce, Faisal Ahmed, Alberto Pereira, Simona Glasberg||Under development|
|COVID-19 Mineral||Maria Luisa Brandi, Camilla Schalin-Jäntti, Natasha Appelman-Dijkstra, Faisal Ahmed, Alberto Pereira, Simona Glasberg||Active|