1. 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

2. …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.

3. CDC’s Cancer Prevention and Control Programs

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

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

6. 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

7. 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+)

8. 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

9. What do the ‘eyes” see in the cancer continuum ?

10. Vital Records - Cancer Deaths Death

11. Cancer Registries - New Occurrences of Cancer Diagnosis Prevention

12. 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 /

13. 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

14. 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, 1975-2004

17. The Cancer Continuum Early Detection Diagnosis / Stage

18. Female Breast Cancer Cases Diagnosed at Early Stage Percentage of Cases 1985–1987 < 39.1 39.1–48.1 48.2–55.9 56 & over

19. 1995–1997 Female Breast Cancer Cases Diagnosed at Early Stage < 39.1 39.1–48.1 48.2–55.9 56 & over Percentage of Cases

20. 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)

21. The Cancer Continuum Diagnosis Treatment & Rehabilitation Palliative Care Death Survival

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

23. Deaths … to update vital status Incident Cases

24. 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

25. Clinical Research vs. Public Health Clinical trialshighest achievable survival Public healthaverage survival achieved

26. 123450 10 20 30 40 50 60 70 80 90 100 0 1996-99 1991-95 1986-90 2000-01 Relative survival (%) Years since diagnosis

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

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

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

30. 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

31. Important Collaborations between Cancer Registries and Vital Records Hannah Weir HBW4@CDC.GOV (770) 488-3006