The data owners (SEER registry PIs and CMS) hold NCI responsible for tracking the use and location of all released SEER-Medicare data. Given that interest in SEER-Medicare data continues to grow exponentially, there is an ever increasing number of data requests that need to be tracked. In order to ensure that NCI is knowledgeable about how the data are being used, who is using the data and to avoid a change in scope, limitations on the number of data updates, data retention and data sharing are warranted.
The maximum number of times data can be obtained for the same project is three: initial data request and then updated data from the next two subsequent linkages. If additional updates are desired, investigators will need to submit a new application for review and approval.
The Data Use Agreement (DUA) states the data retention time period is 5 years. If additional time is necessary to complete the approved project, investigators must request a one year extension to the DUA. These extensions may be renewed annually until a maximum data retention period of 10 years. If more than 10 years has lapsed since data were initially received, investigators will need to submit a new application for review and approval. Without an approved extension, all SEER-Medicare data must be destroyed.
When the project is complete or at 5 years without an extension, the SEER-Medicare data should be destroyed to close out the DUA. All SEER-Medicare files MUST be destroyed at the end of maximum data retention period (10 years). This destruction must include all raw data files, all analytic files, all backup files and the original media. An email should be sent to the SEER-Medicare contact attesting that the destruction is complete so that the DUA can be closed.
Investigators will be allowed to share data for approved projects with colleagues at their institute only if the data:
- pertain to the same cancer site and Medicare claims , and
- were purchased within the previous 2 years.
Please note that the data retention period for the shared data will commence from when the data for the initial project was received not when the request to share the data was submitted.
Last Updated: 22 Oct 2018