SEER-Medicare: Required Documents & Instructions for Submitting Requests
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.
Some of the files on this page are in the RTF format. You must have appropriate reader software to view these files. Most word processor software can read and save files in this format. If you are unable to view or complete a form that is in RTF format, please consult the SEER-Medicare contact.
- Required Documents
- Submitting a Request
- Approval & Processing Time
- Instructions for Requesting New Data for Previously Approved Projects
- Application form
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 other cancer) will be used, if requested;
- description of the personnel involved; and
- timeline for completion.
- References can be included, if relevant.
Please note: No investigator can request the entire database.
- SEER-Medicare Data Use Agreement (DUA)
This document lists the terms the investigator must agree to in order to receive access to the SEER-Medicare linked data. The original document signed by the Principal Investigator must be received by the SEER-Medicare contact before any data can be released. 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.
Investigators accessing the SEER-Medicare data via VPN must sign the DUA as the Principal Investigator. The IT staff or personnel supervising the data where it is stored 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 that you have received approval from 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 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
- SEER-Medicare Data Use Agreement**
- Documentation of IRB approval
- Request form for restricted variables (if necessary)**
**The original signed SEER-Medicare DUA and Request form (if necessary) must also be mailed to the SEER-Medicare contact. These original documents must be received before any data can be released.
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. If possible, please send both the original and electronic version of this letter.
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 for incorporation into a master file of projects.
- A completed and signed SEER-Medicare Data Use Agreement.
The letters and proposal should be sent as e-mail attachments. The original SEER-Medicare DUA must be mailed to the SEER-Medicare contact. 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 can take 4-6 weeks. Requests for access to restricted variables require approval of the SEER registries. 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. Once the proposal is approved 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 4-6 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 for Previously Approved Projects
Investigators may request updated data twice for a previously approved project. To request the updated data, investigators must send the SEER-Medicare contact the following items:
- By e-mail: A completed Update Request form.
- By mail: A new completed SEER-Medicare Data Use Agreement.
Requests for new data for previously approved projects do not have to go through the approval process again. Any changes to the original project or requests for files not previously received will have to be approved.
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. This original signed DUA must be received by the SEER-Medicare contact before any files will be released.
Investigators interested in receiving new data or using previously released data for a new project should follow the instructions for submitting a request.
Last Updated: 09 Apr 2015