Research studies that request identifiable patient data will be required to complete an Information Sharing Agreement (ISA). The ISA is an agreement between the Principal Investigator (PI) and BC Renal (BCR), to access data that is within the PROMIS database, which also includes transplant patient data. The signed and completed ISA will be required before access to data or researcher access to PROMIS can be provided. A BC Renal ISA template form is provided by PROMIS. Initial contact with PROMIS can be made through the PROMIS JIRA Service, creating a ticket online (through the PROMIS portal - Service Desk) or by emailing Support at firstname.lastname@example.org.
To complete the ISA, the Principal Investigator (PI) of the study is required to obtain review and approval through their Research Ethics Board (REB). Once REB approval has been received the ISA can be completed along with the other requested appendix documents and sent to PROMIS for final BC Renal sign-off. The ISA document is required to be completed with attachments provided to PROMIS as noted in the ISA along with the highlighted sections completed which pertain specifically to the research study. Only once the ISA is signed by the PI for the particular research study and by the BC Renal Data Steward, can the research data be extracted for the PI.
Once an ISA is in place for research data, data requests can be sent to PROMIS by completing a JIRA Service ticket under Requests for Information, by using the Request for Information form (found under Forms on the PROMIS portal page) or by sending the attachment to the Support email at email@example.com, which will also create a service desk ticket.