How to Request CCR Data

1. Choose your data scope type

New Research Data Request: Original projects that have not previously requested data.

Additional Research Data Request: Request for additional data sets or data variables, for a previously approved project, with a current CPHS protocol. Please email ccrresearch@health.ucdavis.edu for instructions. Please include:

• PI Name
• Project Name

If you are looking for statewide data, proceed to Step 2.

If you are looking for regional data, meaning data limited to a regional registry, the request should be made through that registry directly.

• Greater Bay Area Cancer Registry: Data Release Coordinator at gbacr@ucsf.edu
• Cancer Registry of Greater California: Data Disclosure Coordinator at crgc-data@crgc-cancer.org
• Los Angeles Cancer Surveillance Program: Data Utilization Coordinator at cspstudy@usc.edu

Step 2. Request Committee for the Protection of Human Subjects (CPHS) Letter of Support

CPHS, CCR’s IRB, requires a letter of support (LOS) from the CCR. To provide the LOS, CCR requires a draft of the CPHS protocol application and a list of CCR variables you plan to request. Please allow a minimum of one month prior to CPHS’s protocol application deadline for CCR to prepare a LOS. You will need to submit the following documents to CCR:

• PDF draft of CPHS protocol application
• List of requested CCR variables and justification
  • To generate your list of data items, please refer to our data dictionary and submit the CCR Variables Requested for Research spreadsheet.

Note: CCR and CPHS are separate entities. For questions regarding IRB Manager or the CPHS process, please contact cphs@chhs.ca.gov.

3. CCR Preliminary Review

CCR conducts internal review of the draft CPHS protocol and data items. Each request will be reviewed to meet CCR requirements. CCR staff will work with you on any changes or clarifications that may be required.

4. Receive Letter of Support from the CCR

Once the request passes CCR preliminary review, CCR issues the letter of support and provides guidance on additional CCR requirements.

5. Await CPHS approval and Complete Required Supporting Documents

Once CCR issues the LOS, you will work directly with CPHS through IRBManager to receive approval for your CPHS protocol. For questions regarding IRBManager, or the CPHS process, please email cphs@chhs.ca.gov.

Please note, CPHS approval is not the final approval necessary for receipt of data.

Most of these documents are not available through CCR. Contact the appropriate agencies to obtain them.

• A copy of the protocol application approved by CPHS.A copy of the CPHS Letter of Approval.
• A copy of the institutional IRB approval/determination letter
• A copy of the grant award, if applicable.
• A completed Application for the Disclosure of Confidential California Cancer Registry Data.
• A partially executed California Department of Public Health – California Cancer Registry Data Use and Disclosure Agreement (Research).
• Note: CCR is no longer accepting Appendix 3: Confidentiality Agreement for Disclosure of CCR Data for new research projects.  Appendix 3 is being replaced by CCR Data Use and Disclosure Agreement (DUA). Please note that CCR is accepting modification requests for the DUA. If your institution requests edits, please submit a redlined version of the DUA to the CCR research inbox at ccrresearch@health.ucdavis.edu.  CCR will coordinate modification requests with CDPH and provide updates as they become available.
• A copy of the Vital Statistics Advisory Committee (VSAC) approval letter, if applicable.
• If you are requesting CCR variables containing death-related information such as vital status, cause of death, or survival time, you will need to go through the CDPH’s VSAC approval process. Please contact the CCR Data Disclosure Coordinator at ccresearch@health.ucdavis.edu for a copy of the current CCR-HIRS Joint Application. The PI will need to complete and sign the CCR-HIRS Joint Application. Please note that the PI’s signature needs to be notarized. The completed, signed, and notarized application then comes to CCR for the branch chief’s signature. We will send the counter-signed application back to the PI, and the PI submits it to CDPH VSA.  You will work directly with CDPH VSAC to received their approval.  All questions related to the VSAC approval process can be directed to HIRS@CDPH.CA.GOV.