The Cancer Registry of Greater California (CRGC) provides access to aggregated data for examination or discloses CRGC data in support of bona fide research activities to researchers who meet state prescribed requirements including standards for protection of patient privacy, data security, and confidentiality.
Data available include compiled datasets (where justified, identifying variables may be requested) on cases from CRGC’s service regions for examination, analyses, linkages, as well as case listings for patient contact studies.
Policies and procedures make a distinction between permissions of access and disclosure. Please note that all cancer registry data in California are confidential, not only identifiable data or identifiers.
- Data access refers to permission to examine data but does not confer a right to retain or duplicate data.
- Data disclosure refers to permission to examine data and retain a copy for authorized use in the conduct of approved research.
Requesting CRGC Data
Please follow the steps listed below to request the CRGC data for research purposes. If you are looking for statewide data or multi-regional data (i.e. data from CRGC and non-CRGC counties), please contact the California Cancer Registry (CCR) at: ccrresearch@health.ucdavis.edu. You can also learn more about the CCR data request process here: www.ccrcal.org/retrieve-data/
1. Complete the Initial Request Form for Cancer Registry Data.
Upon receipt of an initial request, CRGC registry staff will contact you to provide:
- Consultation on the availability of data and the feasibility of its use in a research project
- Guidance on administrative requirements including additional required documentation and payment of fees
2. Complete the application and required supporting documents.
Refer to the list below or the Researcher Check List.
Required items:
- Acknowledgment of CRGC Policies and Procedures
- Application for Disclosure of Confidential Registry Data for Research
- CCR Data Use and Disclosure Agreement (DUA; applies to case listing requests that include any HIPAA identifiers including date components beyond year) OR Confidentiality Agreement for the Disclosure of CCR De-Identified Data
- Committee for the Protection of Human Subjects (CPHS)-approved study protocol
- Copy of CPHS IRB Letter of Approval
- Copy of Institutional IRB Letter of Approval
- List of requested data items including brief justification for each data item (see the CCR Data Dictionary)
- Copy of Grant Award, if applicable
- Copy of Vital Statistics Advisory Committee (VSAC) approval letter (if requesting vital statistic variables)
For additional information, review CCR Policies and Procedures for Access to and Disclosure of Confidential Data.
3. Submit all required documents to CRGC.
Email all documentation to crgc-data@crgc-cancer.org.
4. Await approval.
CRGC research staff will review your application and forward the necessary materials to the CCR to obtain CDPH’s signature on the CCR DUA or Confidentiality Agreement. Upon approval, we will make arrangements for the secure data transfer.
Appropriate fees must also be paid to CRGC (see the Summary of Service Fees).
Frequently Asked Questions
How long does the data request process take?
Please allow approximately 4-6 weeks to process a data request and 8-10 weeks from the time of project approval to receipt of data.
What are the costs associated with requesting data?
Please see the Summary of Service Fees.
Who must sign the Appendix 2: Confidentiality Agreement for Access to Data?
The Principal Investigator (PI) may grant access to data for individuals at the same institution who are participants in the study for which data was requested. These persons must sign an Appendix 2: Confidentiality Agreement for Access to CCR Data. The PI must keep records of all signed Appendix 2 forms and may be asked to submit a list of individuals with access to CRGC data.
Who can I contact with more questions?
Please contact CRGC research staff at crgc-data@crgc-cancer.org.
