How to Request CCR Data - California Cancer Registry

[vc_row][vc_column][vc_column_text][/vc_column_text][/vc_column][/vc_row][vc_row css=”.vc_custom_1532168147525{background-color: #ffffff !important;}”][vc_column][vc_row_inner][vc_column_inner el_class=”state_wide_regional” width=”1/12″ offset=”vc_hidden-sm vc_hidden-xs”][vc_icon icon_fontawesome=”fa fa-info” color=”orange” css=”.vc_custom_1551356794189{margin-top: -13px !important;}” el_class=”res_ico”][/vc_column_inner][vc_column_inner el_class=”para_data” width=”11/12″][vc_column_text css=”.vc_custom_1721854684924{margin-bottom: 0px !important;}”]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.[/vc_column_text][vc_column_text css=”.vc_custom_1738708962350{margin-bottom: 0px !important;}”]

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 link a study’s cohort or other data source to CCR data using probabilistic matching software.

[/vc_column_text][vc_column_text css=”.vc_custom_1551356447494{margin-top: -15px !important;margin-bottom: 0px !important;}”]Please follow the sequence of steps below to submit a request.[/vc_column_text][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row][vc_column][vc_column_text][/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css=”.vc_custom_1532168147525{background-color: #ffffff !important;}”][vc_column][vc_row_inner][vc_column_inner el_class=”icon_num” width=”1/12″][vc_raw_html el_class=”res_num”]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[/vc_raw_html][/vc_column_inner][vc_column_inner el_class=”state_wide_regional” width=”1/12″ offset=”vc_hidden-sm vc_hidden-xs”][vc_icon icon_fontawesome=”fa fa-map-o” color=”orange” css=”.vc_custom_1533036923313{margin-top: -13px !important;}” el_class=”res_ico”][vc_icon icon_fontawesome=”fa fa-map-marker” color=”orange” css=”.vc_custom_1533036933987{margin-top: -10px !important;}” el_class=”res_ico”][/vc_column_inner][vc_column_inner el_class=”para_data” width=”10/12″][vc_column_text css=”.vc_custom_1551358080253{margin-bottom: 0px !important;}”]

Choose your data scope type

If you are looking for Statewide Data, proceed to step 2[/vc_column_text][vc_column_text el_class=”para_or” css=”.vc_custom_1533212851433{margin-top: -15px !important;margin-bottom: 0px !important;padding-right: 100px !important;}”]

(or)

[/vc_column_text][vc_column_text css=”.vc_custom_1551358441183{margin-top: -15px !important;margin-bottom: 0px !important;}”]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.[/vc_column_text][vc_empty_space height=”16px”][vc_column_text css=”.vc_custom_1752686087443{margin-top: -15px !important;margin-bottom: 0px !important;}”]

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 ccrresearch@health.ucdavis.edu to start an application.

Start by downloading and filling out the 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 ccrresearch@health.ucdavis.edu for information about the process

[/vc_column_text][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css=”.vc_custom_1532328681032{background-color: #ffffff !important;}”][vc_column][vc_row_inner][vc_column_inner el_class=”icon_num” width=”1/12″][vc_raw_html]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[/vc_raw_html][/vc_column_inner][vc_column_inner width=”1/12″ offset=”vc_hidden-sm vc_hidden-xs”][vc_icon icon_fontawesome=”fa fa-envelope-open-o” color=”orange” css=”.vc_custom_1532341768408{margin-top: -14px !important;}”][/vc_column_inner][vc_column_inner el_class=”para_data” width=”10/12″][vc_column_text css=”.vc_custom_1532681209098{margin-bottom: 0px !important;}”]Submit ALL required documents to CDPH
(application from step 2 and documents from step 3)[/vc_column_text][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row css=”.vc_custom_1551358591587{background-color: #ffffff !important;}” id=”regionalcontacts”][vc_column][vc_row_inner][vc_column_inner width=”1/12″][/vc_column_inner][vc_column_inner width=”1/12″][/vc_column_inner][vc_column_inner width=”1/12″ offset=”vc_hidden-sm vc_hidden-xs”][vc_icon icon_fontawesome=”fa fa-map-o” color=”orange” css=”.vc_custom_1532357558350{margin-top: -55px !important;}”][vc_icon icon_fontawesome=”fa fa-map-marker” color=”orange” css=”.vc_custom_1543308508526{margin-top: 75px !important;}”][/vc_column_inner][vc_column_inner el_class=”para_data1″ width=”9/12″][vc_column_text css=”.vc_custom_1752686129506{margin-top: -45px !important;margin-bottom: 0px !important;}”]Statewide Data:
Chronic Disease Surveillance and Research Branch’s(CDSRB)program at ccrresearch@health.ucdavis.edu

The California Cancer Registry will coordinate multi-region or statewide requests.

[/vc_column_text][vc_column_text css=”.vc_custom_1736201912926{margin-bottom: 0px !important;}”]

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: Data Utilization Coordinator: Melissa Buac Dimacali, MPH at cspstudy@usc.edu

Await Approval

Upon CDSRB approval of the project, you will receive the counter signed Appendix 3 (Agreement for Disclosure of CCR Data), Letter of Approval and Financial Agreement Acknowledgment. We will make arrangements for the secure data transfer at that time.

[/vc_column_text][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row css=”.vc_custom_1532343296644{background-color: #f99e26 !important;}”][vc_column][vc_row_inner][vc_column_inner width=”1/12″][/vc_column_inner][vc_column_inner width=”1/12″ offset=”vc_hidden-sm vc_hidden-xs”][vc_icon icon_fontawesome=”fa fa-clock-o” color=”orange” size=”lg” css=”.vc_custom_1532350699876{margin-top: -14px !important;}”][/vc_column_inner][vc_column_inner width=”10/12″][vc_column_text el_class=”call_out_para” css=”.vc_custom_1666391405076{margin-bottom: 0px !important;}”]

CCR staff strives to deliver data within 8-10 weeks from the time of formal approval. However, data processing time is dependent upon available CCR resources and complexity of your project.

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.

[/vc_column_text][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1532160792001{margin-bottom: 0px !important;}”]

Frequently Asked Questions

[/vc_column_text][vc_toggle title=”Do I need to submit an Appendix 2 Confidentiality Agreement form to CCR?” style=”round” color=”white” open=”true”]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.[/vc_toggle][vc_toggle title=”How detailed does my justification need to be for my list of requested variables?” style=”round” color=”white”]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.[/vc_toggle][vc_toggle title=”Data Request/Preparation Costs” style=”round” color=”white”]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.[/vc_toggle][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row]