Researchers

Access to and Disclosure of CCR Data:

The California Cancer Registry is no longer able to provide a public use file. You may still access the data or have the data disclosed to you, but there are additional requirements. On October 2, 2001 the Governor signed Senate Bill 683, effective immediately, that stopped our ability to provide a Public Use File. The bill changed section 103850 of the Health and Safety Code as follows:

  • (g) (1) all information collected pursuant to this chapter shall be confidential. For purposes of this chapter, this information shall be referred to as confidential information.
  • (3) Persons with a valid scientific interest who are engaged in demographic, epidemiological or other similar studies related to health who meet qualifications as determined by the department, and who agree, in writing, to maintain confidentiality, may be authorized access to confidential information.
  • (4) Before confidential information is disclosed, the requesting entity shall agree in writing to maintain the confidentiality of the information, and in the case of researchers, shall also do the both of the following:
  • (A) Obtain approval of their committee for the protection of human subjects established in accordance with Part 46 (commencing with Section 46.101) of Title 45 of the Code of Federal Regulations.
  • (B) Provide documentation to the department that demonstrates to the department's satisfaction that the entity has established the procedures and ability to maintain the confidentiality of the information.

For more detail about the revised law see: California Health and Safety Code, sections 103875-103885

To obtain access to or to have the CCR data disclosed to you please follow the procedures in "Access to and Disclosure of of Confidential Data from the California Cancer Registry". If you have any questions, please contact Allyn Fernandez-Ami, 916-779-2574.

Data Record Linkage with the CCR Data:

Data record linkage is the process where we determine if a record in one file matches to one or several records in another file. Currently, the CCR uses software named "Integrity" that enables us to perform probabilistic linkages. The document "Linkage Access Procedures" contains additional information about data record linkages. To have linkage performed by the CCR you will also need to follow the instructions for disclosure of CCR data in "Access to and Disclosure of Confidential Data from the California Cancer Registry". If you have any questions, please contact Allyn Fernandez-Ami, 916-779-2574.