Table 3.

Codes for Topics Addressed in Secondary Data Use Guidelines

Topic	Definition
Published Requirements Before Access
Complete application to access data	Forms or applications documenting that the user agrees to the “after access terms” are required to access data.
Clarification given about potential fees	Fee required for access to the data.
Data producer permission for some or all datasets	Access to the data may require permission from the original research team that deposited the data.
Fulfill special conditions to access restricted use data	Access to data is restricted (e.g., use by principal investigators is permitted but access is not granted for students) or embargos on datasets may delay access.
Justify purpose for data use	Must explain aims and purpose of the proposed secondary use.
Adherence to the requirements of research ethics committee	The secondary data may be required to adhere to the requirements of their ethics committee (e.g. IRB, HREC, IEC, ERB, REB, etc).
After Access Topics
Time limit on data use	Access to data is only available for a limited period.
Commercial use prohibited	Use of data is allowed only for non-profit purposes.
Continued data anonymity required	Secondary users must not attempt to re-identify participants.
Redistribution of downloaded data prohibited	Secondary users will not share the data with, or provide access to, unauthorized individuals.
Cite data source in publications	Give credit to the repository and original research team when publishing results from secondary use of the data by referencing the bibliographic citation in any of the secondary users’ publications.
Secondary user accountable for new discoveries	New discoveries or claims stemming from secondary use of the data are the responsibility of the secondary researcher.
Send citations or notify repository about publications written on the basis of the downloaded data	References to publications from secondary use of the data must be sent to the repository for posting with original dataset.
Share new dataset created from secondary use	New datasets created through secondary use of the data may be added to the original data deposit to supplement the materials.