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

Model for Cancer Control Measure & Evaluate Cancer Burden Plan Interventions Prevention Screening Treatment & rehabilitation Palliative Care Act Implement Interventions

The Cancer Continuum Prevention Early Detection Diagnosis / Stage Treatment & Rehabilitation Palliative Care Death Survival

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 Cancer Control in Action

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 AK HI SEER SEER/NPCR (2000+)

National Program of Cancer Registries (NPCR) 1992 Cancer Registries Amendment Act  1995 – 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 % % % % % % 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 /

NORTHEAST Division State State contributing mortality data State contributing incidence and mortality data WEST Seattle-Puget Sound San Francisco- Oakland San José- Monterey Los Angeles AZ AK WY OR HI ID MT UT NV CO WA NM CA PACIFIC MOUNTAIN PA ME NY MIDDLE ATLANTIC NEW ENGLAND SOUTH Atlanta TX GA TN AL KY AR OK MS FL LA VA NC SC EAST SOUTH CENTRAL SOUTH ATLANTIC WEST SOUTH CENTRAL WV Detroit OH ND KS IA NE MO MN WI MI IN WEST NORTH CENTRAL EAST NORTH CENTRAL SD IL United States Cancer Statistics: 2004 Census Region and Division MIDWEST

Female Breast Cancer (Invasive) SEER Incidence and U.S. Death Rates Incidence Death *Rates are per 100,000 and are age-adjusted to the 2000 U.S. standard population. Source: SEER Cancer Statistics Review,

The Cancer Continuum Early Detection Diagnosis / Stage

Female Breast Cancer Cases Diagnosed at Early Stage Percentage of Cases 1985–1987 < – – & over

1995–1997 Female Breast Cancer Cases Diagnosed at Early Stage < – – & over Percentage of Cases

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 Treatment & Rehabilitation Palliative Care Death Survival

Linkage between the Registries and State Vital Statistics Offices Incident Cases All Deaths Cancer RegistryVital Statistics

Deaths … to update vital status Incident Cases

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 trialshighest achievable survival Public healthaverage survival achieved

Relative survival (%) Years since diagnosis

Relative and Population “Cure” Relative Survival and Population “Cure” “cured” patients Mean survival of fatal cases

Cure for more Colorectal Cancers, UK Source: M. Coleman

The “Eyes” and “Hands” of Cancer Control Prevention Early Detection Diagnosis Treatment & Rehabilitation Palliative Care Death Survival

Model for Cancer Control Measure & Evaluate Cancer Burden Incidence Stage at diagnosis Deaths Survival Plan Interventions Prevention Screening Treatment & rehabilitation Palliative Care Act Implement Interventions

Important Collaborations between Cancer Registries and Vital Records Hannah Weir (770)