The Committee for the Protection of Human Subjects (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.
Note: CCR and CPHS are separate entities. For questions regarding IRB Manager or the CPHS process, please contact cphs@chhs.ca.gov.
There are three types of data requests that you can make through CCR:
- Case listings for analysis only
- Case listings for patient contact
- Data linkages. Data record linkages connect a study’s cohort or other data source to CCR data using probabilistic matching software.
Please follow the sequence of steps below to submit a request.
1. Choose your data scope type
If you are looking for statewide data, proceed to Step 2.
Or:
If you are looking for regional data, meaning data from a specific regional registry, the request should be made through that registry directly. Please contact the regional registries before proceeding to Step 2.
Note: To obtain any death-related data fields, such as vital status, cause of death, or survival time, researchers need additional approval from the Center for Health Statistics and Informatics. Please contact the research coordinator at ccrresearch@health.ucdavis.edu to start an application.
2. Download and complete the application
Start by downloading and completing the following application:
Disclosure of Confidential Registry Data for Research
Note: For additional information, review the supporting documents listed below.
3. Complete the required supporting documents
Most of these documents are not available through CCR. Contact the appropriate agencies to obtain them.
- A copy of the study protocol application and list of variables submitted for CPHS approval.
- For repeat projects, if changes have been made to the study protocol, submit a copy of the amendment application sent for CPHS approval and a copy of the amendment approval letter.
- A copy of the CPHS Letter of Approval.
- A copy of the institutional IRB Letter of Approval.
- A copy of the grant award, if applicable.
- A list of requested CCR variables, including justification and a note about any death-related variables. Consult the Data Dictionary to determine what information is available in the CCR database.
- A copy of the Vital Statistics Advisory Committee (VSAC) approval letter, if requesting death-related information such as vital status, cause of death, or survival time. Contact CCR at ccrresearch@health.ucdavis.edu for information about the process.
4. Submit all required documents to CDPH
Submit the application from Step 2 and all required documents from Step 3.
Statewide data requests
Submit statewide data requests to the Chronic Disease Surveillance and Research Branch program at ccrresearch@health.ucdavis.edu.
The California Cancer Registry will coordinate multi-region and statewide requests.
Regional data requests
For requests limited to patients residing within a single region, contact that regional 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 Melissa Buac Dimacali, MPH, at cspstudy@usc.edu
5. Await approval
Upon CDSRB approval of the project, you will receive the countersigned Appendix 3 Agreement for Disclosure of CCR Data, a Letter of Approval, and a Financial Agreement Acknowledgment. CCR will make arrangements for secure data transfer at that time.
Estimated delivery time: CCR staff strives to deliver data within 8–10 weeks from the time of formal approval. Data processing time depends on available CCR resources and the complexity of the project.
Handling Confidential Patient Information
Access to CCR data is strictly limited under California law. All principal investigators must sign the Confidentiality Agreement for Disclosure of CCR Data (Appendix 3).
The principal investigator may grant access to CCR data to individuals at the same institution who are participating in the study for which the data was requested. These individuals must sign a Confidentiality Agreement for Access to CCR Data (Appendix 2), and the principal investigator must maintain records identifying everyone who has access to CCR data.
In addition to Appendix 2, all employees handling sensitive patient information must sign a confidentiality pledge promising to actively maintain the privacy of patient information and acknowledging their responsibilities when handling sensitive data.
Do I need to submit an Appendix 2 Confidentiality Agreement form to CCR?
Only the principal investigator of a project is required to complete this form. The PI will grant access to all individuals using the CCR data at your location and will keep all signed Appendix 2 forms and confidentiality pledges in their files. They may be asked to submit a list of individuals with access to CCR data on an annual basis.
How detailed does my justification need to be for my list of requested variables?
CCR discloses only the minimum necessary patient information to accomplish the intended purpose of the study. Requested variables may be grouped by topic. Please include the specific variables' names and then give a brief 2-3 sentence justification.
Data Request/Preparation Costs
To obtain data request costs, please visit the Data Preparation Costs section of this site.
For additional information about cancer data for research, contact the data disclosure administrator at ccrresearch@health.ucdavis.edu.