At the time a researcher fills a Data Access Request in REMS, they should see the count of participants in the cohort that match their data use statement. Currently the description of a dataset can only carry a static overall participant count. A live count driven by the DAR content would answer the researcher's question of "is it worth the effort to fill out this DAR given the cohort I would actually gain access to?"
This requires interaction between REMS (DAR content, data use statement) and CTRL (participant consent state, opt-ins per use type). As the researcher refines the data use statement in the DAR form, the matching cohort count would shrink or grow accordingly.
Context
Raised during CTRL presentation at the AGDR (Aotearoa Genomic Data Repository) fortnightly leadership meeting on 15 July 2026.
At the time a researcher fills a Data Access Request in REMS, they should see the count of participants in the cohort that match their data use statement. Currently the description of a dataset can only carry a static overall participant count. A live count driven by the DAR content would answer the researcher's question of "is it worth the effort to fill out this DAR given the cohort I would actually gain access to?"
This requires interaction between REMS (DAR content, data use statement) and CTRL (participant consent state, opt-ins per use type). As the researcher refines the data use statement in the DAR form, the matching cohort count would shrink or grow accordingly.
Context
Raised during CTRL presentation at the AGDR (Aotearoa Genomic Data Repository) fortnightly leadership meeting on 15 July 2026.