Enhancing Data through Linkages
Enriching cohorts to strengthen their value to research
Dr Rachel would like to investigate the incidence of major cancers and their factors in the cohort. To do that, she will need to enhance the cohort through linkage of national registries and/or electronic health records.
Key considerations
- To allow linkage of the data collected with additional records held by national electronic health records, registries, government organisations etc.
- To allow secondary use of data and human biological materials.
- To obtain re-consent from participants or obtain waiver from the institutional review board (IRB) if consent was not sought for linkage.
- Availability of individually-identifiable data is required for linkage.
- Trusted Third Party (TTP) to handle individually-identifiable data.
- Linked de-identified data to be provisioned for research use with the appropriate approvals and security controls for data storage, access and use.
- Minimise possibility of re-identification of participants through the data.
- To allow linkage of the data collected with additional records held by national electronic health records, registries, government organisations etc.
- To allow secondary use of data and human biological materials.
- To obtain re-consent from participants or obtain waiver from the institutional review board (IRB) if consent was not sought for linkage.
- Availability of individually-identifiable data is required for linkage.
- Trusted Third Party (TTP) to handle individually-identifiable data.
- Linked de-identified data to be provisioned for research use with the appropriate approvals and security controls for data storage, access and use.
- Minimise possibility of re-identification of participants through the data.