For sample one, the sample recruited via hospital, only identifying information required for the purposes of follow up will be collected (email and phone number). This identifying information will only be accessed by members of the research team who are required to contact participants for follow up. Data will be captured electronically via REDCap and securely stored in the Murdoch Children’s Research Institute’s (MCRI’s) REDCap database system, which is backed up nightly to a local backup server, with a monthly backup taken to tape and stored offsite. REDCap maintains an audit trail of data create/update/delete events that is accessible to project users who are granted permission to view it. Access to REDCap will be provided via an MCRI user account or (for external collaborators) via a REDCap user account created by the MCRI system administrator. The permissions granted to each user within each REDCap project will be tightly controlled and in accordance with ethics approval.
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