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Population-Based Cancer Registries
in the United States:
Usefulness in HPV Vaccine Monitoring
Deblina Datta, MD
National STD Prevention Conference
March 11, 2008
Cancers Attributable to Oncogenic
HPV Infection
•
•
•
•
•
•
Cervical cancer (12,000-13,000 cases/yr)
Anal cancer
Vulvar/Vaginal cancer
Penile cancer
Some head and neck cancers
Approx. 20,000 cancer cases/year
attributable to HPV infection
Cancer Registration-What is it and
how does it occur?
•
•
•
•
Fundamental surveillance method for cancer in the US
Population-based (state or metro area)
Cases diagnosed by providers in hospital based registries
Also diagnosed in non-hospital settings (physician
offices, non-hospital based pathology labs, radiation
centers, surgery centers, etc.)
• Cases registered by trained personnel (Certified Tumor
Registrars)
• Reporting to state based registries either through
– Direct reporting
– Via regional registries
• Provide information for a national database of cancer
incidence
Types of Data Collected through
Cancer Registries
•
•
•
•
•
Reports of incident cases
Demographics
Primary anatomic site of cancer
Cancer histologic type
Extent of disease at the time of diagnosis
(stage)
• Planned first course of treatment
• Outcome of treatment and clinical management
(survival and vital status)
Population-based Cancer Registries:
Functions
• Measure burden of cancer in a well defined
geographic area (typically a state)
• Monitor cancer trends over time
• Determine cancer patterns in various
populations (e.g. racial disparities)
• Guide planning and evaluation of cancer control
and prevention programs
• Guide priority-setting for allocating health
resources
• Advance clinical, epidemiologic, and health
services research around cancer in the US
National Cancer Registration in the
US: Structure of the System
• Federal Agencies-Data Collection and
Dissemination, based on Congressional Acts
– NCI, Surveillance, Epidemiology, and End
Results (SEER) program, estab 1971
– CDC, National Program of Cancer Registries
(NPCR), estab 1992
• Non-profit Organization-Establish and Maintain
Data Standards
– North American Association of Central Cancer
Registries (NAACCR)
Cancer Registries in the US: 100%
Population Coverage by NPCR and SEER
Invasive Cervical Cancer Incidence Counts and
Age-Adjusted Invasive Cervical Cancer Incidence
Rates, US, 2002-2004
Count
Rate
All Races
34,806
8.3
White
27,176
7.8
Black
5,291
11.6
Asian/Pacific Islander
1,381
7.5
American
Indian/Alaska Native
248
6.3
5,578
13.0
Hispanic*
*Hispanic origin is not mutually exclusive from race categories (white, black).
Cervical Cancer Precursors Data
Collection in NPCR: Background
• Some previous experience collecting
cervical carcinoma in situ (CIS/CIN 3)
• Decision to discontinue collection of CIS
data in 1996 based on concerns over new
nomenclature and misclassification of
cases
• Michigan Central Cancer Registry has
continued to collect CIS data
Rates* of Invasive Cervical Cancer
and CIS, Michigan, 1985-2003
Cervical CIS Rates
Invasive Cervical Cancer Rates
70
60
50
40
30
20
10
0
1985
1986
1987
1988
1989
1990
1991
1992
*Rates per 100,000 persons
Data courtesy of MI Central Cancer Registry
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
Age Specific CIS Rates*, Michigan,
1985-2003
Figure 3 Age-Specific In Situ Cervical Carcinoma Incidence Rates
by Age and Year of Diagnosis
Michigan Resident Females, 1985 - 2003
250
< 20
20-29
30-39
40-59
60-79
80 +
Age-Specific Rate
200
150
100
50
0
1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003
Year of Diagnosis
*Rates per 100,000 persons
Data courtesy of MI Central Cancer Registry
Current Directions: Cervical Cancer
Precursors Data Collection in NPCR
• Three central cancer registries
– Michigan Central Cancer Registry (NPCR and SEER,
geographically distinct sites)
– Louisiana Tumor Registry (NPCR and SEER)
– Kentucky Central Cancer Registry (NPCR and SEER)
• Leverage infrastructure
– Experienced tumor registrars
– Data streams from pathology labs (and other sources)
– Apply data standards for completeness, accuracy,
timeliness
Current Directions: Cervical Cancer
Precursors Data Collection in NPCR
• Collection of incidence data on CIN2/3 vs. CIN 3
vs. CIS in population-based registries
• Additional data elements
– Race and ethnicity
– Age
– Zip code
• Electronic data reporting
• Linkage with vaccine registries (Michigan) for
vaccination history
Current Directions: HPV Typing of
Cervical Cancers in NPCR
• Approx 12,000 cervical cancer cases
reported per year in NPCR
• 4 state-based central cancer registries
– Addition of Florida
• Collection of pathology specimens from a
sample of cancer cases to be sent to CDC
for HPV typing
Acknowledgements
• Michigan Central Cancer Registry
– Glenn Copeland
• CDC
– Cheryl Cardinez
– Mona Saraiya
– Hillard Weinstock
The findings and conclusions in this presentation are those of the authors and do not
necessarily represent the views of the Centers for Disease Control and Prevention
For more information:
NPCR
http://www.cdc.gov/cancer/npcr/
SEER
http://seer.cancer.gov/