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National Program of Cancer Registries Hannah K. Weir, PhD Cancer Surveillance Branch Centers for Disease Control and Prevention, Atlanta, Georgia Outline of Presentation Overview of cancer surveillance in the US How registries use vital statistics data Why cancer registry data in combination with vital statistics data is important to cancer control Outline of Presentation Overview of cancer surveillance in the US SEER NPCR How registries use state vital statistics data Why cancer registry data in combination with vital statistics data is important to cancer control Surveillance, Epidemiology, and End Results Program (SEER) 1971 National Cancer Act 1973+, 5 States, 4 Metro Areas, 10% population coverage 1991 added 2 more Metro Areas, 14% population coverage 2001, added 4 more states, 26% population coverage Publish CSR Conducting surveillance research SEER SEER/NPCR (2000+) AK HI National Program of Cancer Registries (NPCR) 1992 Cancer Registries Amendment Act 1994+ first awards 1998, 45 states, 3 territories, District of Columbia; 96% population coverage 2001 NPCR-Cancer Surveillance System Publish USCS SEER NPCR NPCR/SEER AK HI As of 1998, a Cancer Registry in Every State… Seattle/Pu get Sound Detroit San Francisco/ Oakland San Jose/ Monterey IA N J UT CA C T KY Los Angel es NM Atlanta LA HAWAII ALASKA *National REPUBLIC OF PALAU Program of Cancer Registries (CDC) Epidemiology, and End Results Program (NCI) †Surveillance, NPCR* SEER` † NPCR/SEER PUERT O VIRGIN RICO ISLAND S NPCR-Funded Cancer Registries State health departments receive support for populationbased registry and report their data to CDC annually State law with regulations protection of staff at CCR and facilities protection of confidential data reporting from facilities reporting from health care providers access to medical records data in standard format access to data by researchers use of data for cancer control Outline of Presentation Overview of cancer surveillance in the US How registries use state vital statistics data To find incident cases To update vital status and cause of death Why cancer registry data in combination with vital statistics data is important to cancer control Linkage between the Registries and State Vital Statistics Offices Cancer Registry Incident Cases Vital Statistics All Deaths … to update vital status and identify… Incident Cases Cancer Deaths … Death Certificate–Only (DCO) cases Cancer Registry Incident Cases Cancer Deaths Vital Statistics DCO National Death Index To obtain vital statistics information on patients who move out of state between the time of their diagnosis and death NPCR – NDI application approved April 2006 Outline of Presentation Overview of cancer surveillance in the US How registries use vital statistics data Why cancer registry data in combination with vital statistics data is important to cancer control Surveillance Incidence based mortality Survival Survivorship “The reason for collecting, analyzing and disseminating information on a disease is to control that disease. Collection and analysis should not be allowed to consume resources if action does not follow.” Cancer Prevention and Control Program o m p r e h e n s i v e C a n c e r C o n t r o l C Nationwide Surveillance United States Cancer Statistics: 2002 Incidence and Mortality State, regional, and national data Rates for whites, blacks, Asians/Pacific Islanders (A/PI), Hispanics, and children Covers 100% US population for mortality And increasing incidence 1999 ….. 78% 2000 ….. 84% 2001 ….. 92% 2002 ….. 93% 2003 ….. 95% (not published) Incidence-based Mortality Understand the role of incidence and survival on mortality trends (e.g.. the role of PSA in prostate cancer incidence and mortality) Survival Studies Clinical trials - highest achievable survival Population-based - survival achieved Cancer survival (5-years) in Europe and USA: patients diagnosed 1985-89 NHL Hodgkins Prostate Ovary Uterus Cervix Melanoma Breast Lung Rectum Colon Stomach 0 20 40 Europe 60 80 100 SEER Gatta et al., 2000 Relative survival and population “cure” “cured” patients Survivorship Studies Prevalence (i.e., number of patients alive with a history of cancer) – information used for health care planning Long term effects of treatment (e.g., childhood and young adult cancers) Summary Together cancer registry and vital statistics data play an important role cancer control NPCR and NAPHSIS should work together to ensure balance between….. Data Use Data Protection Hannah K Weir [email protected] 770 488-3006