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The National Program of Cancer Registries: Enhancing Cancer Incidence Data … Hannah K. Weir, PhD Division of Cancer Prevention and Control Centers for Disease Control and Prevention …with Vital Records Data for Cancer Control Cancer Control: an approach to reducing cancer incidence, morbidity and mortality through prevention, early detection, treatment, rehabilitation and palliation. CDC’s Cancer Prevention and Control Programs 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 Model for Cancer Control Plan Interventions Measure & Evaluate Cancer Burden • • Act Implement Interventions • Prevention • Screening Treatment & rehabilitation Palliative Care The Cancer Continuum Diagnosis / Stage Death Survival Prevention Treatment & Early Detection Rehabilitation Palliative Care Cancer Control in Action If Cancer Control Planners are the “hands” of CC Plan and implement the interventions) Vital Records and Cancer Registries are the “eyes” of CC Measure and evaluate cancer burden 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 SEER SEER/NPCR (2000+) AK HI National Program of Cancer Registries (NPCR) 1992 Cancer Registries Amendment Act 1995 – 1998 45 states, 3 territories, District of Columbia 96% population coverage SEER NPCR NPCR/SEER AK HI What do the ‘eyes” see in the cancer continuum ? Vital Records - Cancer Deaths Death Cancer Registries - New Occurrences of Cancer Diagnosis Prevention United States Cancer Statistics Combined NPCR and SEER incidence data Increase in population coverage 1999 .. 78% 2002 .. 93% 2000 .. 84% 2003 .. 96% 2001 .. 92% 2004 .. 98% 100% cancer death data State, regional, and national incidence and mortality data for whites, blacks, Asians/Pacific Islanders (A/PI), American Indian/Alaska Native (AI/AN), Hispanics, and children www.cdc.gov/cancer/npcr/ United States Cancer Statistics: 2004 Census Region and Division Seattle-Puget Sound WA OR PACIFIC ID WY San FranciscoOakland San JoséMonterey SD WEST NORTH CENTRAL MOUNTAIN NV MI WI IA NE CO KS MO IL MIDDLE ATLANTIC PA OH IN WV KY Los Angeles AZ NM OK WEST AR TX AK WEST SOUTH CENTRAL LA AL VA NC TN MS NEW ENGLAND NY Detroit EAST NORTH CENTRAL UT CA NORTHEAST ND MIDWEST MN MT ME Atlanta EAST SOUTH CENTRAL SC SOUTH ATLANTIC GA Division State FL HI SOUTH State contributing mortality data State contributing incidence and mortality data Female Breast Cancer (Invasive) SEER Incidence and U.S. Death Rates Incidence 160 140 Rate Per 100,000 120 100 80 60 Death 40 20 0 '75 '76 '77 '78 '79 '80 '81 '82 '83 '84 '85 '86 '87 '88 '89 '90 '91 '92 '93 '94 '95 '96 '97 '98 '99 '00 '01 '02 '03 '04 *Rates are per 100,000 and are age-adjusted to the 2000 U.S. standard population. Source: SEER Cancer Statistics Review, 1975-2004 Year The Cancer Continuum Diagnosis / Stage Early Detection Female Breast Cancer Cases Diagnosed at Early Stage 1985–1987 Percentage of Cases < 39.1 39.1–48.1 48.2–55.9 56 & over Female Breast Cancer Cases Diagnosed at Early Stage 1995–1997 Percentage of Cases < 39.1 39.1–48.1 48.2–55.9 56 & over Institute of Medicine Reports “ We all want to believe that when people get cancer, they will receive medical care of the highest quality. Even as new scientific breakthroughs are announced, though, many cancer patients may be getting the wrong care, too little care, or too much care, in the form of unnecessary procedures.” (IOM 1999) “NPCR …has great potential to facilitate national, population-based assessments of the quality of cancer care …” (IOM 2000) The Cancer Continuum Diagnosis Death Survival Treatment & Rehabilitation Palliative Care Linkage between the Registries and State Vital Statistics Offices Cancer Registry Incident Cases Vital Statistics All Deaths … to update vital status Incident Cases Deaths Blanket NPCR-NDI Application 2006 – application approved to obtain vital status information on cancer patients who move our of state between the time of their diagnosis and their death Clinical Research vs. Public Health Clinical trials highest achievable survival Public health average survival achieved 100 90 Relative survival (%) 80 70 60 50 2000-01 1996-99 40 1991-95 1986-90 30 20 10 0 0 1 2 3 4 Years since diagnosis 5 Relative Survival and Population “Cure” Mean survival of fatal cases “cured” patients Cure for more Colorectal Cancers, UK 45 40 Colon Cure (%) 35 1986-90 Rectum 1981-85 30 1976-80 25 1971-75 20 Women Men 15 0 10 0.0 0.5 1.0 1.5 2.0 Mean survival of "fatal" cases (years) Source: M. Coleman 2.5 The “Eyes” and “Hands” of Cancer Control Diagnosis Death Survival Prevention Treatment & Early Detection Rehabilitation Palliative Care Model for Cancer Control Plan Interventions Measure & Evaluate Cancer Burden • Incidence Stage at diagnosis • Deaths Survival Act Implement Interventions • Prevention • Screening Treatment & rehabilitation Palliative Care Important Collaborations between Cancer Registries and Vital Records Hannah Weir [email protected] (770) 488-3006