SEER-Medicare: Required Documents & Instructions for Submitting Applications

Please be aware that in compliance with CMS, we no longer release SEER-Medicare data outside the USA.

Instructions for Submitting an Application

Release of SEER-Medicare data is project specific. You must have an approved application in order to access these files.

The materials for the application packet should be sent to the SEER-Medicare contact as email attachments. Please submit one application and corresponding documentation per email. The required documents are:

1. Application form (DOCX, 47 KB)

   This form has been developed to collect all information necessary to process a data request. In order to facilitate the review process, you must complete all sections. Incomplete applications will be delayed. The description of your project (Section II-C) must include:

   • statement of main hypothesis/specific research question;
   • description of study subjects and cancer sites/phases to be included in the analysis;
   • brief explanation of how key components of the study will be obtained/identified within the cancer and/or claims data - specifically:
     • cohort selection criteria,
     • covariates, and
     • outcomes;
   • a list of requested files and how each will be used (for example: MEDPAR will be used..., NCH will be used...);
   • how the 5% population (non-cancer and/or cancer) will be used, if requested;
   • description of the personnel involved; and
   • timeline for completion.
   • References can be included, if relevant.
   
   

   Researchers may only access the SEER-Medicare files to work on the project as described in project description. Any other analysis must be submitted for approval prior to beginning the work.

   Each application must include a detailed data storage and protection plan. Cloud-based storage will be evaluated during an additional review process on a case by case basis and may be approved by the NCI.

   An instructional mock application can be obtained upon request.

   Please note: No investigator can request the entire database.

2. SEER-Medicare Data Use Agreement (DUA) (PDF, 259 KB)

   This document lists the terms the investigator must agree to in order to receive access to the SEER-Medicare linked data. Principal Investigators are responsible for monitoring / controlling all access to the SEER-Medicare linked data In the case of students and fellows, the department chair or advisor from the student's academic institution must sign the DUA and submit the application as the Principal Investigator.

   The Principal Investigator should have all staff that will access these files sign the DUA for their records. If other personnel (e.g. IT staff) will be supervising the storage of the data, they must sign a CUSTODIAN DUA, which is available from the SEER-Medicare contact.

3. Institutional Review Board (IRB) approval

   Please provide documentation of the determination of the Institutional Review Board (IRB) of your local institution. The title on the IRB approval must correspond with the title on the SEER-Medicare data request. For more information, please see IRB approval and HIPAA Regulations.

4. Request form (DOCX, 23 KB) for Restricted Variables (if applicable)

   Requests for restricted variables must be approved by the Principal Investigator of each SEER Registry. If an investigator believes these variables are essential to their research, they must complete, sign and submit a request form. Requests for restricted variables usually must be approved by the Principal Investigator of each SEER Registry. Please see Privacy and Confidentiality Issues.

5. Funder letter (if applicable)

   If your organization is a consulting firm, contractor, biomedical or pharmaceutical company, or your project is funded by one of these entities, your application must include information about the funding source. The application packet must include a letter from the funder indicating that you are free to work and publish your findings without limitations by the funder. This letter must be on company letterhead.

6. SEER-Medicare DMP SAQ (if applicable)

   As a result of CMS implementing new data access policies, which will require all CMS data, including SEER-CMS data, to be transitioned to a federally managed enclave environment, NCI will not be approving new cloud-based storage requests. During the transition to the enclave requirements, cloud storage will only be allowed if you already have a DMP SAQ for cloud storage that was approved by NCI or CMS.

All requests for SEER-Medicare data must be reviewed and approved before any data can be purchased.

NOTE: There is increased interest in using SEER-Medicare data for mapping of cancer incidence, treatment, and survival. If you plan to map data at any resolution or report on only one registry or state, please state this clearly in your proposal application. NCI is committed to protecting the privacy of the SEER registries, the hospitals and physicians, and, ultimately, the patients represented in the data. Requests to present data for a single registry must be approved by the Principal Investigator for that registry.

SEER Registries

NCI supports the SEER registries in their use of SEER-Medicare data for registry-conducted projects. Registry-conducted projects include use of SEER-Medicare data to assess the completeness of registry data or research analyses conducted by registry staff. NCI will provide data for registry-conducted projects without charge for up to 4 projects per year. This includes requests for updated data. Data released for registry-conducted projects should be maintained on the registry's institutional computer systems. Researchers from SEER registries who are requesting SEER-Medicare data as part of funded research, such as grants and contracts, will be required to reimburse IMS, NCI’s biocomputing contractor, for the cost of acquiring the SEER-Medicare data.

SEER Investigators must submit to the SEER-Medicare contact:

1. A letter from the SEER Principal Investigator for that registry stating that this is a registry-conducted project and that he/she is a collaborator on the project.
2. A completed application form (DOCX, 47 KB) for incorporation into a master file of projects.
3. A completed and signed SEER-Medicare Data Use Agreement (PDF, 259 KB).

The letters and proposal should be sent as e-mail attachments. All documents must be received before any files can be released.

Approval & Processing Time

Applications for SEER-Medicare linked data are reviewed by NCI-led content experts. The review team may provide comments on the project, which will require a response and revision by the investigator. Initial reviewer comments are usually provided within 2-3 weeks. This process continues until the reviewers are satisfied with the application.

If the application includes a request for access to the restricted variables, the application packet must be sent to the SEER Registries after the initial NCI-led review is complete. Each SEER PI must approve the release of the requested variables in their registry’s data. The SEER-Medicare contact will guide the requestor through this process. The registry review can take at least 8-10 weeks. The SEER-Medicare contact will follow up with each registry until they have input from each registry.

When the review process is complete, IMS (NCI's biocomputing contractor) will contact investigators to ensure they obtain all the data files needed for the analysis. Omissions and errors in ordering files are the responsibility of the investigator.

Preparing the data requires 2-4 weeks from receipt of payment, depending on the number of requests in the queue. See Cost of Acquiring SEER-Medicare Data for information about the fees charged to cover the cost of creating the data files. Investigators can estimate the cost of the request by using the cost calculator.

Changes to Previously Approved Applications

Any change to a previously approved application, including to the data storage plan, must be submitted for review using the update/change request form (DOCX, 32 KB), and approved before proceeding with the change. Please be aware that the reviewers can decide that the requested change to the project should be submitted as a new application. In that case you would have to complete the application form and submit it with all the required documentation to proceed. The review team’s decision is final.

Request for Additional Data

Please use the update/change request form (DOCX, 32 KB) to request updated data for a previously approved application. Any change to the project must be approved before you can proceed with the update request. If there are no changes to the project description/data storage plan, no additional approvals are required. You would be invoiced for the updated files. You can use the cost calculator to estimate the cost of the update request.

Investigators with DUAs established prior to December 2020 cannot request updated data, as the currently provided data is not compatible with data released prior to that date.