California Cancer Registry (CCR) is a program of the California Department of Public Health's Chronic Disease Surveillance and Research Branch (CDSRB), and works in collaboration with the Institute of Population Health Improvement, UC Davis Health Systems, regional cancer registries, health care providers, cancer registrars, and cancer researchers throughout California and the nation. CDSRB collects, analyzes, and disseminates information on cancer incidence and mortality.
WHAT DOES THE CALIFORNIA CANCER REGISTRY DO?
The mission of the California Cancer Registry (CCR) is to serve the public by collecting statewide data, conducting surveillance and research into the causes, controls, and cures of cancer and communicating results to the public. The CCR monitors the occurrence of cancer among Californians, both incidence (new diagnoses) and mortality (deaths). The CCR, which is operated by the California Department of Public Health and ten regional cancer registries, is an essential tool for the prevention and control of cancer in California. By law (Health and Safety Code, Section 103885), all new cancer cases diagnosed in California residents since January of 1988 have been reported to the CCR, with strict guidelines to maintain patient confidentiality.
WHAT INFORMATION DOES THE CALIFORNIA CANCER REGISTRY COLLECT?
All data collected by the California Cancer Registry (CCR) are obtained directly from cancer patients’ medical records. The CCR does not interview patients.
The CCR collects demographic, diagnostic, and treatment information on individual cancer cases.
- Demographic data include: patient’s name, address at time of diagnosis, sex, race, and age at diagnosis.
- Diagnostic data include: type of cancer (such as breast cancer) and stage of disease at time of diagnosis.
- Treatment data include: whether the patient had surgery, radiation, or chemotherapy as the first course of treatment.
WHAT ARE THE DATA USED FOR?
California Cancer Registry (CCR) data are used to:
- Monitor the number of new cancer cases and cancer deaths over time;
- Examine disparities in cancer risk, treatment and survival;
- Examine treatment choices and other predictors of survival;
- Measure the success of cancer screening programs;
- Respond to public concerns and questions about cancer; and
- Conduct research to find the causes and cures of cancer.
Researchers have used CCR data to:
- Analyze geographic, racial/ethnic, and occupational differences in cancer risk;
- Evaluate the quality of medical care received by cancer patients; and
- Examine patient survival with respect to cancer type, extent of the disease, demographic characteristics, and other important factors.
WHAT HAS THE CALIFORNIA CANCER REGISTRY ACCOMPLISHED?
The California Cancer Registry (CCR):
- Is internationally recognized for its high quality data;
- Receives major grants to investigate the causes, prevention and the cures of cancer;
- Brings millions of research dollars to California;
- Provides information on cancer rates among the state’s diverse race/ethnicity groups;
- Publishes special reports on many cancer types; and
- Provides the public access to state, regional, and county level cancer incidence and mortality rates plus interactive maps via the internet at www.ccrcal.org.
CANCER REPORTING IN CALIFORNIA – TIMELINE
- 1947 California Tumor Registry established in selected large hospitals
- 1960 Alameda County Cancer Registry established as the first population-based cancer registry in California
- 1969 San Francisco Bay Area Registry included in National Cancer Institute’s (NCI) Third National Cancer Survey
- 1972 Cancer Surveillance Program (CSP) of Los Angeles County established
- 1973 San Francisco Bay Area Registry included in NCI’s Surveillance, Epidemiology, and End Results (SEER) Program
- 1983 Cancer Surveillance Program of Orange County established
- 1985 California Cancer Reporting Law signed into effect (CCR established)
- 1988 Population-based cancer reporting initiated statewide
- 1992 CSP of Los Angeles County included in SEER Program
- 1997 50 years of cancer reporting in California
- 2000 Published ten years of complete statewide cancer reporting
- 2001 Greater California Registry (all regions in California except for San Francisco and Los Angeles) included in SEER Program
- 2007 20 years of statewide population-based cancer reporting
- 2009 Published 20 years of complete statewide cancer reporting
HOW DOES THE CALIFORNIA CANCER REGISTRY SAFEGUARD PRIVACY AND ENSURE DATA SECURITY?
The California Cancer Registry (CCR) was established in 1985 to serve as a key resource in the state for research into the causes and cures of cancer. It has a productive record of using CCR data for research and program evaluation to improve the spectrum of cancer control in California, including prevention, diagnosis, treatment and quality of life. CCR has very stringent policies and procedures to ensure that cancer data reported are maintained with the highest degree of confidentiality and privacy.Cancer researchers must go through a rigorous process to access any CCR data. The CCR will only release patient contact information to qualified researchers under tightly controlled circumstances where the research has first been approved by the California State Committee for the Protection of Human Subjects (CPHS) Institutional Review Board. Research proposals are evaluated by CPHS to ensure patients’ rights are protected and the research justified. Additionally, a federally approved Institutional Review Board (IRB) at the researcher’s institution must also approve the research proposal. This IRB will also ensure that patient rights are monitored and protected.
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