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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/