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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
… 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.”
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
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
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