Required Documents / Instructions for Submitting Requests
Release of SEER-CAHPS 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 cannot release SEER-CAHPS data outside the United States.
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, 115 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 and research aims;
- a statement about how the research has the potential to inform quality of care of older patients;
- a statement of how the research is relevant to the cancer control continuum;
- a description of study subjects and cancer site to be included in the analysis;
- a brief description and justification of each cancer site requested (maximum of 10 sites);
- a description that includes the years of the CAHPS survey that will be used relative to the time of cancer diagnoses;
- a brief explanation of key variables and analytic methods to be used;
- relevant references;
- a description of the personnel involved; and
- a timeline for completion.
SEER-CAHPS Data Use Agreement (PDF, 135 KB) : This document lists the terms the investigator must agree to in order to receive access to the SEER-CAHPS linked data. The original signed document must be received by the SEER-CAHPS 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-CAHPS, 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-CAHPS files. The patient’s Census tract identifier and ZIP code reported by SEER at the time of first cancer diagnosis 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. (see the Data Documentation page). 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.
If investigators determine that encrypted variables are needed in an unencrypted format for their analysis, they must go through a special approval process. Restricted variables include the following unencrypted information: patient ZIP code, provider/hospital ZIP code, patient Census tract identifier, and unencrypted hospital provider numbers (NPIs). Investigators must submit their completed application form (PDF, 115 KB) with a detailed justification for access to the unencrypted variable(s). In addition, a completed and signed request form (PDF, 154 KB) and a list of people that will have access to these data must be included with this request. An NCI staff member will review the application. Once NCI supports the request for these variables, investigators must obtain permission from each of the registries prior to release of unencrypted variables for that registry. The SEER-CAHPS contact will provide investigators with contact information for the SEER registries. Investigators who are requesting unencrypted variables are encouraged to allow sufficient time to obtain the approval from each SEER registry.
Submitting a Request
Requirements for Investigators Not Affiliated with a SEER Registry
All requests for SEER-CAHPS 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 our team:
- Cover letter
- Application form (PDF, 115 KB)
- SEER-CAHPS Data Use Agreement (PDF, 135 KB) **
- Documentation of IRB approval
When uploading your documents please merge all documents into a single file using the order of the documents listed above.
**The original signed SEER-CAHPS DUA and Request form (if necessary) must also be e-mailed to the SEER-CAHPS team. 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 include a copy of the letter from the funder indicating that you are free to work and publish your findings without limitations by the funder.
Requirements for Investigators Affiliated with a SEER Registry
Investigators must submit to the SEER-CAHPS team:
- 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, 115 KB) for incorporation into a master file of projects. A review by other SEER personnel is not necessary.
- A completed and signed SEER-CAHPS Data Use Agreement (PDF, 135 KB) . The SEER-CAHPS 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.
Approval & Processing Time
All requests for SEER-CAHPS data must be reviewed and approved before any data can be purchased. This approval process can take 4-6 weeks. 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-CAHPS 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 send a request for the new files that contains the original project title, and a statement that "the research questions and methodology have not changed”. All requests can be made by e-mail.
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-CAHPS 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 e-mailed to our team 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.