SEER has a long history of enabling and supporting data access to researchers, clinicians and patients. We are committed to continuing that mission. However, as SEER expands the data captured in terms of detail and longitudinal information, the risk of re-identifiability of individuals is increased. Further, in recent years software algorithms have been developed that could leverage other data sources combined with the current limited dataset that has been the primary research file available from the SEER program to re-identify individuals (see References). For these reasons, it is imperative that SEER take measures to protect the confidentiality of the patients within the limited dataset held within the SEER program, to further reduce any risk of re-identifiability. This requires a change in how users can access the data.  

We will continue to support free and open access to our data, but additional requirements for authentication and authorization will be required depending on the data product access being requested. The SEER program is working hard to continue to support the needs of the research community and others who utilize the SEER data while simultaneously increasing assurance of patient confidentiality.

Two SEER Data Products: Research and Research Plus

Starting with the 1975-2017 SEER Data, released on April 15, 2020, there will be two data products available

  1. SEER Research databases which were released on April 15, 2020.
    • Research databases exclude geography (county, state/registry), month in dates (e.g. month at diagnosis), and a few other demographic fields.
    • These data will be available in SEER*Stat case listing sessions which allows download of individual data.
    • Access is made available to individuals who submit a request and sign a Data Use Agreement
  2. SEER Research Plus databases will be made available later this year.
    • Research Plus databases will require a more rigorous process for access that include user authentication.
    • These data will include geography, months in dates, and other demographic fields, as well as information on radiation therapy and chemotherapy given as part of the first-course treatment.
    • If you would like to be notified when the Research Plus databases are available, sign up for updates. Those who request the standard SEER Research databases will automatically be notified when the Research Plus databases are available for request.

For more information about the Research and Research Plus databases, including a dictionary of all the variables included by data type, see SEER*Stat Database Details for the November 2019 Submission.

Other Data Changes in this Release

  1. SEER no longer excludes Louisiana cancer cases in all Research and Research Plus databases. This is a change from previous releases. See Adjustments for Areas Impacted by Hurricanes Katrina and Rita for more information.
  2. Data files are no longer available for download in ASCII text or binary file formats. Data can only be accessed through SEER*Stat in client-server mode. If you need to work with individual cancer cases and export SEER*Stat results for use in SAS, R, or other software refer to the SEER*Stat Case Listing Tutorials.

References