SEER-Medicare: Required Documents & Instructions for Submitting Requests
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Release of SEER-Medicare data is project specific. You must have an approved application in order to access these files. You may only access these files to work on the project as it was described in the approved application. Any other analysis must be submitted as a new application with all the appropriate paperwork. No work can begin on any new aim/project until all approvals have been secured.
Datasets containing any restricted variables may only be accessed to work on the project for which the release of the restricted variables was approved. These data cannot be used for any subsequent analysis.
Please be aware that in compliance with CMS, we no longer release SEER-Medicare data outside the USA.
- Application form (DOCX, 34 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 items listed on this form. Please use the form. Do not say "see attached". Incomplete applications will be delayed. The description of your project (Section 2D) must be no more than five pages and 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 PEDSF and/or claims data -- specifically:
- cohort selection criteria,
- covariates, and
- 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.
An instructional mock application can be obtained upon request.
Please note: No investigator can request the entire database.
- SEER-Medicare Data Use Agreement (DUA) (PDF, 224 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 the access to and use of the data by co-investigators and programmers within their institution or organization. The Principal Investigator should require all staff that will access these data sign a DUA, but these internal DUAs should not be submitted to the SEER-Medicare contact.
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 PI 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.
Cloud Storage services do not meet privacy rules and are not acceptable for the storage of SEER-Medicare data.
- 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.
- Request form (DOCX, 20 KB) for restricted
variables (if necessary)
Restricted variables are not routinely released. If an investigator believes these variables are essential to their research, they must complete, sign and submit a request form. This form only needs to be submitted if the investigator is requesting access to restricted variables. Requests for restricted variables usually must be approved by the PI of each SEER Registry. It is the requestor's responsibility to seek the approval from each registry. Please see Privacy and Confidentiality Issues.
Note: In order to combine multiple requests when purchasing data, the requests must have the same permissions for access to any restricted variable.
Submitting a Request
All requests for SEER-Medicare data must be reviewed and approved before any data can be purchased. Each of the following documents should be submitted as an e-mail attachment to the SEER-Medicare contact:
- Application form (DOCX, 34 KB)
- SEER-Medicare Data Use Agreement (PDF, 224 KB)
- Documentation of IRB approval
- Request form (DOCX, 20 KB) for restricted variables (if necessary)
Note: Please submit one application and corresponding documentation per email.
If your organization is a consulting firm, contractor, or pharmaceutical company, then your proposal must include information about the funding source and 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.
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.
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 for the cost of acquiring the SEER-Medicare data.
SEER Investigators must submit to the SEER-Medicare contact:
- 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.
- A completed application form (DOCX, 34 KB) for incorporation into a master file of projects.
- A completed and signed SEER-Medicare Data Use Agreement (PDF, 224 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
All requests for SEER-Medicare data must be reviewed and approved before any data can be purchased.
This approval process for requests that do not include restricted variables can take at least 4-6 weeks. Requests that do include restricted variables require additional approval either at NCI and/or by each of the SEER registries. Therefore, the approval process for restricted variables can take at least 8-10 weeks.
If SEER registry approval is necessary, the SEER-Medicare contact will provide the contact information at the appropriate time in the review process. It is the responsibility of the requestor to contact the registries to obtain approval. However, once the investigator sends the materials, the SEER Medicare contact will follow up with the SEER PIs. When the SEER-Medicare contact receives notification of approval from all registries, and the Data Use Agreement is on file, IMS (NCI's programming 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 3-5 weeks. See Cost of Acquiring SEER-Medicare Data for information about the fees charged to cover the cost of creating the data files.
Instructions for Requesting New Data / Changes for Previously Approved Projects
To request updated data or make any change to a previously approved application, investigators must send the SEER-Medicare contact by email a completed Update / Change form (DOCX, 20 KB) . If requesting data, you must include a completed and signed SEER-Medicare Data Use Agreement (PDF, 224 KB) . The new DUA should include all years of data that the investigator will have in his possession, as it will replace the DUA currently on file. Investigators may request updated data twice for a previously approved project. Any changes to a previously approved application must be submitted for approval prior to beginning any work or changing the data storage location.
Requests for only updated data for previously approved projects do not have to go through an approval process. However, any changes to the original project or requests for files not previously received will have to be approved. Please use the Update / Change form (DOCX, 20 KB) to detail any changes to your project.
Investigators interested in receiving new data or using previously released data for a new project should follow the instructions for submitting a request.