- About Us
- Contact Us
- Registrar Resources
- Reports & Factsheets
- Data & Mapping Tool
- Cancer Patient Notification Information
Cancer Data for Research
Individual patient level data may be used to study cancer causes, prevention, treatment, and survival for research studies. Requests are made by an individual (usually a principal investigator) and the institution with which the principal investigator is affiliated. To protect the confidentiality of the data and comply with state law, researchers must submit all of the required documents to CCR for approval. All requestors should read Policies and procedures for Access to and Disclosure of Confidential Data for the California Cancer Registry.
There are three types of requests that can be made: case-listings for data analysis only, case-listings for patient contact, and data record linkages. All three requests are specific to an approved project. Data record linkages link a study's cohort or other data source to the CCR data using probabilistic matching software. For more information refer to Linkage Procedures.
Please Note: Allow for 8-10 weeks from the time of formal approval of your project to receipt of data.
For additional information about cancer data for research, please contact the data disclosure administrator at firstname.lastname@example.org
Requirements and Information for Confidential Data Requests
- Appendix 2
- Appendix 3
- Appendix 4: Example Confidentiality Pledge
- Appendix 5: CCR Patient Record Request Form
- Appendix 6: CCR Patient Record Request Check List
- Application for CCR Case-Listing Requests
- Application for CCR Case-Listings for Patient Contact Requests
- Application for CCR Linkage Requests
- Do I need to submit an Appendix 2?
No, the PI of the project will grant access to the individuals using the CCR data at your location. The PI will sign as the CCR data custodian and need to keep the signed Appendix 2s in their files. They may be and asked to submit a list of individuals with access on an annual basis.
- How detailed does my justification need to be for my list of requested variables?
You can group your list of variables by topic (please include the specific variables’ names) and then give a brief 2-3 sentence justification.