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. 2024 Mar 8;20(4):2886–2893. doi: 10.1002/alz.13719

TABLE 3.

Major themes.

Enrollment and research participation

Management

(security and storage)

Data sharing

(From Inv. 1 to Inv. 2)

Investigator Participant Investigator Participant Investigator Participant
Participant Decision Making Study Description Institution Institution Data Sharing Process Data Sharing Process
Disclosure Process Enrollment Data Security Data Security Researcher Assumptions Legal Protections
Unrelated Discrimination De‐Identification Process Identification Discrimination Recommendations
Participant Trust Identifiable Data Importance of Data Sharing Data Sharing Perspectives
Status Decision Making Data Collection and Document Inv. Trust in Legal/Process
Status Disclosure Oversight/Governance
FTD Researcher Recommendations
Discrimination Gate Keeping
Efforts to Avoid Discrimination