Obtaining Data for Research

Cancer researchers depend on the data collected by the Greater Bay Area Cancer Registry to conduct research on cancer causes, prevention, care and treatment. Use of this data in research is mandated by the state of California as part of the law for cancer registration. Individual patient data used for studies are released only after requirements to protect confidentiality, set by state law, are met.

Confidential data refers to any individual-level patient data, regardless of whether it contains identifying information or not.

Types of Confidential Data Requests

  • Confidential patient listings include registry information about individual cancer patients for studies that test a specific hypothesis through collection of additional information, contact with patients and/or analysis of the data.
  • Early case ascertainment identifies patients closer to diagnosis than is possible through regular reporting to the registry. It is conducted for research when patient contact is needed quickly.
  • Linkages are performed to match individuals listed on other databases (for example, occupational or health care) to the registry database to identify those who developed cancer while residents of California. Linkages of a cancer group from the registry may also be conducted to determine outcomes (e.g., vital status). Linkages are conducted through the California Cancer Registry (CCR); visit their researcher webpage for more information.
  • See the CCR Data Dictionary to view all variables or a subset of variables based on a specific area of research interest.

Requirements for Confidential Data Requests

To obtain confidential data, a researcher must meet all of the following requirements, as defined in the CCR's Access to and Disclosure of CCR Data:
  • Demonstrate that the purpose of the research is consistent with the state mandate "... to determine the sources of malignant neoplasms or to evaluate measures designed to eliminate, alleviate, or ameliorate their effects." (California Assembly Bill 136, passed in 1985) 
  • Provide compelling scientific justification for the research, with evidence of peer review.
  • Have undergone examination of the study by the California Committee for the Protection of Human Subjects, a federally approved Institutional Review Board (IRB), as well as any other IRBs required by the recipient institution.
  • Show evidence of adequate procedures for protecting the confidentiality of patient information: CCR Information Security Policy (PDF)
  • Provide assurances that information on individuals will not be disclosed further.
For a more detailed description of the requirements to receive individual patient data, and the associated legislation, please go to the California Cancer Registry's Legislation and Regulations webpage.

Confidential Data Release Information and Applications

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