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Table 1 Examples of types of data-sharing models

From: Sharing individual participant data: through a systematic reviewer lens

Data-sharing model Level of access Mode of access Type of data Level of collaboration with original trialists Examples
IPD released directly to data requestor
Single-question IPD meta-analysis
Usually to address one or more specific research questions Negotiate provision of IPD from trialists IPD provided directly to data requestor Usually pseudonymised Usually fully collaborative Single-collaboration IPD reviews [40, 41]
Topic-based repository
Retrospective:
Assembly of multiple existing IPD databases within a topic area to address new questions. May include new trials as they become available
Negotiate provision of IPD from trialists IPD provided directly to data requestor Usually pseudonymised Collaborative ACCENT [14]; ARCAD [21]; EBCTCG [11]; ICECaP M0 [20]
Prospective:
Plan to assemble IPD from all trials within a topic area, whilst most of the trials are still ongoing or yet to report, to address planned questions or new questions arising
STOPCAP M1 [24]
IPD released to requestor via data platform
Data available on demand with unrestricted access Data available to download online (usually only registration is required) IPD provided directly to data requestor; usually via direct download Usually fully anonymised Not usually collaborative freeBIRD [34]; International Stroke Trial (IST) database [42]
Moderated access Subject to the approval of a formal research proposal IPD provided directly to data requestor May be fully anonymised or pseudonymised Potential to be collaborative CSDR [37]; YODA [38]; VIVLI [39]; NCTN/NCORP [36]
IPD accessed/analysed within host platform
Moderated and restricted (“locked-box”) access Subject to the approval of a formal research proposal IPD available only within secure environment May be fully anonymised or pseudonymised Not usually collaborative CSDR [37]; YODA [38]; VIVLI [39]; NCTN/NCORP [36]
Remote data interrogation
Analyses taken to the data Subject to approval of a formal research proposal IPD interrogated remotely; question(s) and/or analysis software provided by the data requestor Not applicable— no direct access to data Not usually collaborative DataSHIELD [35]