How to Request CCR Data
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 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.
- Case listings for analysis only
- Case listings for patient contact
- Data linkages: data record linkages link a study’s cohort or other data source to CCR data using probabilistic matching software. For more information refer to CCR Linkage Procedures.
Please follow the sequence of steps below to submit a request.
If you are looking for Statewide Data, proceed to step 2
(or)
If you are looking for Regional Data(i.e., requesting 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(e.g., vital status, cause of death and survival time), researchers need additional approval from the Center for Health Statistics and Informatics. Please contact the research coordinator at hs-ccrresearch@ou.ad3.ucdavis.edu to start an application.
Disclosure of Confidential Registry Data for Research
Note: For additional information review the listed documents
Complete the required supporting documents
Most of these documents are not available through CCR. Contact the appropriate agencies
- 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, please send us a copy of the amendment application submitted for CPHS approval and a copy of the amendment approval letter.
- Copy of CPHS Letter of Approval
- Copy of Institutional IRB Letter of Approval
- Copy of Grant Award, if applicable
-
List of requested CCR variables, including justification and note about death-related variables. Consult the Data Dictionary to check what information is available in the CCR database
- Copy of Vital Statistics Advisory Committee (VSAC) approval letter, if requesting death-related information (vital status, cause of death, survival time, etc.) from CCR. Please contact CCR at hs-ccrresearch@ou.ad3.ucdavis.edu for information about the process
Submit ALL required documents to CDPH
(application from step 2 and documents from step 3)
Statewide Data:
Chronic Disease Surveillance and Research Branch’s(CDSRB)program at hs-ccrresearch@ou.ad3.ucdavis.edu.
The California Cancer Registry will coordinate multi-region or statewide requests.
Regional Data:
For requests limited to patients residing within a single region, please contact that region directly at:
- 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: LACSP Studies Administrator: Ann Hamilton, PhD at CSPdata@usc.edu
HANDLING CONFIDENTIAL PATIENT INFORMATION
Access to CCR data is strictly limited under California law. All Principal Investigators (PIs) must sign a Confidentiality Agreement for Disclosure of CCR Data (Appendix 3). The Pl may grant access to CCR data for individuals at the same institution who are participants in the study for which data was requested. These individuals must sign a Confidentiality Agreement for Access to CCR Data (Appendix 2), and the study Pl must keep records of who has access to CCR data. In addition to Appendix 2, all employees handling sensitive patient information must also sign a confidentiality pledge promising to actively maintain the privacy of patient information and informing of them of their responsibilities in handling sensitive data.
Frequently Asked Questions
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 hs-ccrresearch@ou.ad3.ucdavis.edu.
