GloBE-Reg is approved by the National Research Ethics Service and Information Governance authorities in the UK. The information collected by the GloBE-Reg Registry is what is expected to be collected during routine clinical care and may be shared with approved users to perform or develop research studies. The Registry does not collect any information on names, addresses and local hospital numbers. Patients can also access their own information in the Registry and add patient reported outcomes. All information is kept strictly confidential and handled through secure password protected electronic systems and only those who are directly involved with the Registry are able to obtain access. All information is stored on a secure server in the University of Glasgow in compliance with the UK Data Protection Act (2018) and General Data Protection Regulation (GDPR 2016/679).
The following list contains documents that may be required by centres for obtaining local institutional approvals. Please contact us if you need a document that is not listed here.
- Ethics Approval (2022.08)
- Conditions of Ethics Approval
- UK NHS Research Ethics Committee (REC) Application
- Ethics Amendments
- Data Protection Approval Letter
- GloBE-Reg Management Protocol (Data Access Policy v3)
- GloBE-Reg Clinical Study Protocol
- Project Description for GloBE-Reg
- Data Dictionary
- Data Flow in the Registry
- Data Sharing Agreement – Data Disclosers (for centres adding data into the registry)
- Data Sharing Agreement – Data Receivers (for study investigators receiving data from the registry)
- Participant Information Sheets (English) – Adult, Parent, Child (word versions available)
- Informed Consent Form (word version)
- Privacy Notices
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