The NCCC has extensive experience in designing, creating, and managing cancer registries and other large databases. Through their long-term registry management experience, NCCC scientists have developed expertise in identifying eligible individuals, collecting a wide array of demographic data and personal characteristics for these individuals, and following them over time. This expertise is offered to organizations with a need for long-term surveillance. NCCC also provides services to create databases, link registry and other data, and advise on statistics and analysis.
NCCC manages or actively supports the following registries/large databases:
Greater Bay Area Cancer Registry (GBACR): The Greater Bay Area Cancer Registry (GBACR), funded by the U.S. National Institutes of Health and the State of California, covers over six million residents in nine Bay Area counties and is part of the California Cancer Registry and the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) program. The GBACR collects demographic and clinical data annually on the nearly 30,000 newly diagnosed cases of cancer, tracks the vital status of all registered cancer patients, and collects updated treatment and outcomes data on a selected subset of patients. The GBACR has information on nearly one million cancer cases diagnosed since 1973. For approved research studies, the GBACR provides a separate service to identify cancer cases more rapidly (i.e., within two months of diagnosis) than is possible through the regular reporting system (within six to 12 months). Data from the GBACR can be linked with data from other California registries, MediCal, Medicare, and other data sources to provide more comprehensive information on cancer patients in the Bay Area and throughout California (West, Glaser, Clarke, Gomez, Keegan, Rull, Horn-Ross, Chang).
Family Registry for Breast Cancer: NCCC manages the Northern California Family Registry for Breast Cancer, one of six registries in the U.S., Canada, and Australia comprising the National Cancer Institute's Breast Cancer Family Registry (BCFR). Since its inception in 1995, over 13,000 families have been enrolled, including an ethnically and racially diverse group of more than 2,700 families from Northern California, recruited by NCCC scientists. This family registry contains high-quality data on family history of cancer, epidemiologic risk factors, dietary intake, follow-up data on cancer recurrences and deaths, blood samples, and cancer tissue from individuals with breast or ovarian cancer (John, West). These data are available to outside researchers through a request and approval system (contact Dr. John for information).
California Teachers Study: NCCC scientists helped establish and continue to manage the California Teachers Study (CTS), a collaborative study conducted with scientists from the University of Southern California, the University of California at Irvine, and the California Cancer Registry. The California Teachers Study is a long-term, follow-up cohort study of 133,479 female public school teachers and administrators in California. Risk factors and other data collection began in 1995 and data collection has continued on a regular basis. Variables collected include those focused on lifestyle, family history of cancers and other diseases, medical history, diet, selected environmental exposures and women's health. This cohort is followed through many creative mechanisms and new cancers are identified annually through linkage to the California Cancer Registry. Biological samples from a subset of the cohort members are being collected for genetic and molecular analysis (Reynolds, Horn-Ross, Chang, Clarke, West).
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NCCC conducts innovative and dynamic cancer research and outreach programs that explore areas with significant impact on reducing the cancer burden. For more information about our research programs or possible collaborations, contact Tim Radak (tradak@nccc.org, 510-608-5026) or Ingrid Oakley-Girvan (ioakley@nccc.org, 510-608-5045).
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