Participants should be able to see, from within their CTRL portal, which research projects have been granted access to their data. This closes the loop between consent given and data actually used.
The information likely needs to originate outside CTRL - from REMS (approved DARs) or Elsa (data releases) - so an integration or data feed between platforms is required. Scope of the interaction between CTRL and REMS/Elsa to be defined.
Governance consideration: participant visibility of research prior to publication may raise concerns. Some form of researcher agreement or participant-facing disclaimer may be needed as part of this feature.
Context
Raised during CTRL presentation at the AGDR (Aotearoa Genomic Data Repository) fortnightly leadership meeting on 15 July 2026.
Participants should be able to see, from within their CTRL portal, which research projects have been granted access to their data. This closes the loop between consent given and data actually used.
The information likely needs to originate outside CTRL - from REMS (approved DARs) or Elsa (data releases) - so an integration or data feed between platforms is required. Scope of the interaction between CTRL and REMS/Elsa to be defined.
Governance consideration: participant visibility of research prior to publication may raise concerns. Some form of researcher agreement or participant-facing disclaimer may be needed as part of this feature.
Context
Raised during CTRL presentation at the AGDR (Aotearoa Genomic Data Repository) fortnightly leadership meeting on 15 July 2026.