National Program of Cancer Registries Hannah K. Weir, PhD Cancer Surveillance Branch Centers for Disease Control and Prevention, Atlanta, Georgia.

National Program of Cancer Registries

Hannah K. Weir, PhDCancer Surveillance BranchCenters 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

AK HI

SEER

SEER/NPCR (2000+)

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

NPCR

SEER

NPCR/SEER

REPUBLICOF PALAU

HAWAII

PUERTORICO VIRGIN

ISLANDS

ALASKA

Atlanta

Detroit

San Francisco/Oakland

LosAngeles

San Jose/Monterey

Seattle/Puget Sound

CT

NM

UT

IANJ

CA

LA

KY

*National Program of Cancer Registries (CDC)†Surveillance, Epidemiology, and End Results Program (NCI)

*`†

As of 1998, a Cancer Registry in Every State…

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

NPCR-Funded Cancer Registries

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

IncidentCases

All Deaths

Cancer Registry Vital Statistics

Cancer Deaths

… to update vital status and identify…

IncidentCases

… Death Certificate–Only (DCO) cases

Cancer Registry Vital Statistics

DCO

Cancer DeathsIncident

Cases

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

omprehensiveomprehensiveCCancerancerCC

ontrolontrolCC

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)

0.0

50.0

100.0

150.0

200.0

250.0

Mortality Incidence

Survival Studies

Clinical trials - highest achievable survival

Population-based - survival achieved

Cancer survival (5-years) in Europe and USA: patients diagnosed 1985-89

Gatta et al., 2000

0 20 40 60 80 100

Stomach

Colon

Rectum

Lung

Breast

Melanoma

Cervix

Uterus

Ovary

Prostate

Hodgkins

NHL

Europe SEER

Relative survival and population “cure”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