Information for Patients

CCR uses the data to write summary reports that inform the public, local health workers, educators, and legislators about the status of cancer. These summary reports do NOT contain any information on individual cancer cases. The data in these reports are combined into groups for analysis. Researchers may examine these data to identify areas that have high cancer rates and areas where people might benefit from cancer screening and education programs. Researchers can also use these data to look at trends in cancer diagnoses.

A network of 3 reporting regions receives these data and checks for accuracy, analyzes the data, and conducts studies specific to their local area. The central registry in Sacramento combines these data, performs additional quality control, and analyzes the data on a statewide basis.

CCR takes the protection of a patient’s confidential health information very seriously. The law mandates that patient identity be kept confidential and that CCR information may only be released for research into the causes and cures for cancer. CCR will only release information to qualified researchers under tightly controlled circumstances where the research has first been approved by the California Committee for the Protection of Human Subjects (CPHS). Patients can refuse to participate in any particular research study or all research studies. Cancer patients may also request that their contact information be withheld from researchers by contacting CCR at (916) 731-2500.

The state mandates that all cancers diagnosed in California be reported to the California Department of Public Health for CCR. CCR does not provide for removal of cancer patient information from the registry. To fulfill its purpose of providing information to find the causes and cures for cancer, it is vital for CCR records to be complete. However, patients can refuse to participate in any particular research study or all research studies. Cancer patients may request that their contact information be withheld from researchers by calling CCR at (916) 731-2500.

CCR records can only be released to those who are legally authorized to obtain a patient’s confidential information (i.e., self, surviving spouse, conservator, etc.) CCR requires all patient record requests be made in writing.To request information for an individual in our database, download a Patient Record Request Form and see the Checklist of required documentation below. (Note, these forms will automatically download.)

• Patient Record Request Form
• Checklist

CCR and regional registries are permitted to release patient contact information to qualified researchers. Some studies require that researchers obtain additional information from individual cancer patients. These researchers may contact patients to find out if they want to participate in a research study. However, patients have the right to refuse to participate in any research study without jeopardizing their current or future medical care. Cancer patients may also request that their contact information be withheld from researchers by contacting CCR at 916-731-2500.

Patient rights are monitored and protected by a federally approved Institutional Review Board (IRB) at the researcher’s institution. Patients are encouraged to report any concerns or complaints to the IRB. Information about how to contact the IRB should be included in the initial contact letter from the researcher.

• It offers an opportunity to join the fight against cancer
• Thanks to the participation of many cancer patients, their families, and people without cancer, hundreds of research studies have been conducted using CCR data
• This research has contributed to the discovery of major risk factors for cancer, improved treatment, and better survival for cancer patients in California and across the United States

Information on clinical trials is available from the National Cancer Institute’s Cancer Information Service at 1-800-4-CANCER (1-800-422-6237), and from NCI’s web site.

The National Cancer Institute’s Cancer Information Service at 1-800-4-CANCER (1-800-422-6237), and voluntary organizations such as the American Cancer Society (1-800-ACS-2345) (or the ACS office in your area) provide information on cancers. The Centers for Disease Control and Prevention (CDC) is also an excellent resource for information on cancer.

The California Department of Public Health offers a number of programs that focus on cancer prevention, control, screening and/or treatment including the California Obesity Prevention Program, Network for a Healthy California, California Tobacco Control Program, California Colon Cancer Control Program, and Comprehensive Cancer Control Program.