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

2. 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.

3. 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.

4. 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

5. 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

6. 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) * ` †

7. 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 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
- collect uniform data items in a uniform format
- comply with NPCR standards for completeness, timeliness, and
quality of data
- produce a statewide annual report

8. 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.

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

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

11. … Death Certificate–Only (DCO) cases
Cancer Registry
Vital Statistics
Cancer
Deaths
Incident
Cases
DCO

12. 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

13. 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.

14. “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.”

15. Cancer Prevention and Control Program

16. Nationwide Surveillance

17. 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.

18. 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)

19. Survival Studies Clinical trials - highest achievable survival
Population-based - survival achieved

20. 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

21. Relative survival and population “cure”
“cured” patients

22. 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)

23. 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

24. Hannah K Weir