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 I am going to begin by talking about the work of the CTR in the hospital cancer registry. and build up to the work of CTRs in national organizations. Then I will give you some examples of how the data get used.

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 I am going to begin by talking about the work of the CTR in the hospital cancer registry. and build up to the work of CTRs in national organizations. Then I will give you some examples of how the data get used.

Surveillance, Epidemiology, and End Results Program (SEER) AK HI SEER SEER/NPCR (2000+) 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 Turning to 2 critical federal partners in the infrastructure…SEER and NPCR READ SLIDE

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 READ SLIDE Together, the 2 federal programs support Cancer registries in every state DC 3 territories AK HI

As of 1998, a Cancer Registry in Every State… NPCR SEER NPCR/SEER REPUBLIC OF PALAU HAWAII PUERTO RICO VIRGIN ISLANDS ALASKA Atlanta Detroit San Francisco/ Oakland Los Angeles San Jose/ Monterey Seattle/Puget Sound CT NM UT IA NJ CA LA KY *National Program of Cancer Registries (CDC) †Surveillance, Epidemiology, and End Results Program (NCI) * ` †

NPCR-Funded Cancer Registries State health departments receive support for population-based 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 - Under Public Law 102-515 each funded state was required to: - maintain a statewide, population-based cancer registry - have a law authorizing a statewide cancer registry and legislation or regulations in support of the criteria specified in Pubic Law 102-515 - collect uniform data items in a uniform format - comply with NPCR standards for completeness, timeliness, and quality of data - produce a statewide annual report

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 I am going to begin by talking about the work of the CTR in the hospital cancer registry. and build up to the work of CTRs in national organizations. Then I will give you some examples of how the data get used.

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

… to update vital status and identify… Incident Cases Cancer Deaths

… Death Certificate–Only (DCO) cases Cancer Registry Vital Statistics Cancer Deaths Incident Cases 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 I am going to begin by talking about the work of the CTR in the hospital cancer registry. and build up to the work of CTRs in national organizations. Then I will give you some examples of how the data get used.

“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

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) Important to display confidence limits as public health planners and researchers are pressed to display data for smaller population subgroups.

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 When 5 year survival was compared between the aggregated databases (Europe vs. US), these were the finding. For nearly all leading cancers, survival in the US was higher than in Europe. And if you look at prostate cancer, survival is quite a bit higher in the US. The one exception is stomach cancer where survival in the US is lower compared to Europe. 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 hweir@cdc.gov 770 488-3006