SEER-Medicare: Required Documents & Instructions for Submitting Requests
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
- Cover letter
This is a one-page document, usually on letterhead, signed by the investigator that
briefly introduces the investigator and the proposed project. However, the body
of the email used to submit the paperwork can serve as the cover letter.
- 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
- 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 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.
- 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.
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Submitting a Request
Requirements for Investigators Not Affiliated with a SEER Registry
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
(in Word, WordPerfect, or PDF format) to the SEER-Medicare
contact:
- Cover letter
- 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.
Requirements for Investigators Affiliated with a SEER Registry
Investigators must submit to the SEER-Medicare
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 for incorporation into
a master file of projects. A review by other SEER personnel is not necessary.
- A completed and signed SEER-Medicare Data Use Agreement.
The SEER-Medicare contact must have this document before any data can be released.
The letters and proposal should be sent as e-mail attachments. The original SEER-Medicare
DUA must be mailed. This document must be received before any files can be released.
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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.
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Instructions for Requesting New Data for Previously Approved Projects
Investigators interested in receiving the new linkage for a previously approved project
must send the SEER-Medicare contact the following items:
Requests for new data for previously approved projects do not have to go through the
approval process again. Any 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.
In between linkage years, additional years of Medicare data are made available.
Investigators may request these additional years of data for cases they already have if
these cases were extracted from the most recent SEER-Medicare linkage. Investigators
should send the SEER-Medicare contact an e-mail requesting
the additional year(s) of data. They must also send the
SEER-Medicare contact a new DUA by regular mail which includes all years of data that
the investigator will have in his possession, as it will replace the DUA currently on
file. The 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.
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