Required Documents & Instructions for Submitting Requests
Cover letter: This is a one-page document, usually on letterhead, signed by the investigator that briefly introduces the investigator and the proposed project.
Application form (PDF, 192 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. Incomplete applications will be delayed. The description of your project must be no more than five pages and must include:
- a statement of main hypothesis/research question/study aims;
- a statement about how the research has the potential to improve the quality of life of Medicare Advantage Organization cancer patients;
- a description of study subjects and cancer sites to be included in the analyses, including a rationale justifying inclusion of specific cancer sites (note: we will not release data on all cancer sites);
- a description of the MHOS cohort years to be included in the analyses;
- a brief explanation of key variables and analytic methods to be used;
- a description of the personnel involved; and
- a timeline for completion.
SEER-MHOS sample application (PDF, 212 KB)
SEER-MHOS Data Use Agreement (PDF, 228 KB): This document lists the terms the investigator must agree to in order to receive access to the SEER-MHOS linked data. The original signed document must be received by the SEER-MHOS 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. Anyone with access to the data must be listed on and sign the DUA. In the case of students and fellows leading SEER-MHOS, the department chair or advisor from the student's academic institution must sign the data request as the Principal Investigator, and both the chair/advisor and student/fellow need to sign the DUA.
Institutional Review Board (IRB) approval: Please provide documentation that you have received approval from the Institutional Review Board (IRB) of your local institution. For more information, please see IRB Approval & HIPAA Regulations.
Request form for restricted variables (if necessary): For reasons of confidentiality, selected variables are not routinely released on the SEER-MHOS files. These variables include the contract number, plan contract number, plan identification number, and plan name. Additionally, the patient's Census tract identifier and ZIP code reported by SEER at the time of cancer diagnosis, and the ZIP code at the time of the MHOS survey have been encrypted. Separate files that contain geographically-based (ZIP code and census tract level) socioeconomic information from the 1990 and 2000 Censuses and the 2008 – 2012 American Community Survey are provided and can be matched by the encrypted patient census tract and zip code. These aggregated variables have been slightly altered to prevent matching back to the Census data and identifying the actual Census tract or ZIP code. Please review the Privacy and Confidentiality Issues section for more information on these variables.
Submitting a Request
Requirements for Investigators Not Affiliated with a SEER Registry
All requests for SEER-MHOS 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 (in Word, WordPerfect, or PDF format) to the SEER-MHOS contact:
- Cover letter
- Application form (PDF, 192 KB)
- SEER-MHOS Data Use Agreement (PDF, 228 KB)
- Documentation of IRB approval
- Request form for restricted variables (PDF, 138 KB)
When uploading your documents please merge all documents into a single file using the order of the documents listed above. Please include the Request Form for restricted variables (if necessary) in the same file.
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. Please include an electronic version of this letter with your application.
Requirements for Investigators Affiliated with a SEER Registry
Investigators must submit to the SEER-MHOS contact:
- Cover letter.
- A letter from the SEER Principal Investigator for that registry stating that the project is a registry-sponsored activity. Registry-sponsored projects are processed without cost.
- A completed application form (PDF, 192 KB) for incorporation into a master file of projects. A review by other SEER personnel is not necessary.
- A completed and signed SEER-MHOS Data Use Agreement (PDF, 228 KB). The SEER-MHOS contact must have this document before any data can be released.
The letters and proposal should be sent as a single e-mail attachment. When uploading your documents please merge all documents into a single file with the Cover Letter and Application preceding the signed DUA and documentation of IRB approval. Please include the Request Form for restricted variables (if necessary) in the same file.
Approval & Processing Time
All requests for SEER-MHOS 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 completion of the request for restricted variables application. In some instances, special approval by the SEER registries may be required. The investigator will be informed of the necessity for SEER registry approval if applicable. 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 an additional 4-6 weeks. See Cost of Acquiring SEER-MHOS 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 interested in receiving the new linkage for a previously approved project must e-mail the SEER-MHOS contact the following items:
- A request for the new files that contains the original project title, and a statement that "the research questions and methodology have not changed."
- A new completed SEER-MHOS Data Use Agreement (PDF, 228 KB).
Requests for new data for previously approved projects do not have to go through the approval process again; however, the same costs of acquiring SEER-MHOS data apply to the new data request.
The new DUA should include all years of data that the investigator will have in his or her possession, as it will replace the DUA currently on file. This revised DUA must be received by the SEER-MHOS 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, above.