1. Population-Based Cancer Registries in the United States:
Usefulness in HPV Vaccine Monitoring
Deblina Datta, MD
National STD Prevention Conference
March 11, 2008
My talk will focus on monitoring the outcomes of high-risk or oncogenic HPV infection, namely, anogenital cancers. Specifically, I will discuss the system of cancer surveillance in the US, which is based on a national network of cancer registries. I will focus my talk on the usefulness of cancer registries in their current role of monitoring HPV related cancers and briefly discuss plans to expand the role to include monitoring for cervical cancer precursors, an earlier manifestation of oncogenic HPV infection.

2. 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
This is a list of HPV related cancers. There are approximately 20,000 cases per year. Most are anogenital cancers, but a small number of head and neck cancers are included. It is important to note, that of these cancers, not all cases are due to HPV. Cervical cancer contributes the largest number of cases, approximately 12-13,000 cases per year, all of which are due to oncogenic HPV. However, less than half of all vulvar, vaginal, and penile cancer cases are associated with HPV, and only about 10% of head and neck cancers are associated.

3. 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
Cancer registration has been around in the US since the 1930’s and is the fundamental method of cancer surveillance in the US and many other countries. Cancer cases are diagnosed by providers in hospital based registries. Registries have expanded over the years to also register cases diagnosed in non-hospital settings such as physician offices, and non-hospital based pathology labs, radiation treatment centers and surgery centers. All cases are registered by certified tumor registrars and reported to to state based central cancer registries, also known as population-based registries either through direct reporting or via regional registries. These data are transmitted to federal agencies to compile a national database of cancer incidence and mortality.

4. 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)
This is a list of the different types of data collected through cancer registries. They include reports of incident cancer cases, demographics of the patients, and various characteristics of the cancer and cancer treatment. Data on mortality from vital records are also integrated into the data.

5. 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
The functions of population-based cancer registries are to:
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

6. 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 registration is supported mainly by three entities: two federal agencies and one umbrella non-profit agency. The federal agencies are responsible for funding and operating state based registires and include CDC, which funds and operates the National Program of Cancer Registries, or NPCR and NCI, which funds and operates the Surveillance Epidemiology and End Results program, or SEER. Both NPCR and SEER programs include state based registries which together cover 100% of the US population and I will discuss each of them in more detail shortly. NAACCR is the …. and plays an active role in:
Education and training of registry personnel
Developing and maintaining uniform data standards across registries in both NPCR and SEER
Certification of complete, timely, and accurate data
Promoting the use of cancer data

7. Cancer Registries in the US: 100% Population Coverage by NPCR and SEER
This map displays the 100% population coverage provided by the NPCR and SEER registries. The NPCR registries are shown in yellow, and constitute a large number of these registries. The SEER registries are shown in white and include a some states as well as several metropolitan areas. A few states, shown in orange have registries funded both by SEER and NPCR.

8. Invasive Cervical Cancer Incidence Counts and Age-Adjusted Invasive Cervical Cancer Incidence Rates, US,
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
Hispanic*
5,578
13.0
*Hispanic origin is not mutually exclusive from race categories (white, black).

9. 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
While the registries have a well-established role in measuring invasive cancer cases, a newer potential role is to collect data on cervical cancer precursor lesions. Cervical cancer precursor lesions are earlier manifestations of oncogenic HPV infection and afford an opportunity measure the impact of HPV vaccine for outcomes which occur 5-10 years after HPV infection (in contrast to the several decades between HPV infection and invasive cancer outcomes. One precursor lesion, Carcinoma in situ, which is also referred to as CIS or CIN3, has been previously monitored in the registries.

10. Rates* of Invasive Cervical Cancer and CIS, Michigan, 1985-2003
*Rates per 100,000 persons
Data courtesy of MI Central Cancer Registry

11. Age Specific CIS Rates*, Michigan, 1985-2003
*Rates per 100,000 persons
Data courtesy of MI Central Cancer Registry

12. 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

13. 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

14. 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

15. Acknowledgements Michigan Central Cancer Registry CDC Glenn Copeland
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

16. For more information: NPCR http://www.cdc.gov/cancer/npcr/ SEER