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CPCRN Meeting. Linda Mulvihill Cancer Surveillance Branch Division of Cancer Prevention and Control October 2009. Department of Health and Human Services. Centers for Disease Control and Prevention. Office of the DIRECTOR. Coordinating Office. Coordinating. Coordinating. Coordinating.

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CPCRN Meeting

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    1. CPCRNMeeting Linda Mulvihill Cancer Surveillance Branch Division of Cancer Prevention and Control October 2009 Department of Health and Human Services

    2. Centers for Disease Control and Prevention Office of the DIRECTOR Coordinating Office Coordinating Coordinating Coordinating Coordinating National Institute for Terrorism Center for Coordinating Office Center for Health Center for Center for Health for Occupational Preparedness & Environmental for Global Health Information and Infectious Emergency Health and Injury Safety and Health Services Promotion Diseases Response Prevention National Center for National Center National Center National Center Environmental on Birth Defects & for Immunization & for Health Health/Agency for Developmental Respiratory Diseases Toxic Substances & Marketing Disabilities Disease Registry* National Center National Center for National Center for National Center for Chronic Zoonotic, Vector-Borne & Enteric Diseases Injury Prevention for Health Disease and Control Statistics Prevention and Health Promotion *ATSDR is an OPDIV within DHHS National for HIV/AIDS, Viral Hepatitis, STD & TB Prevention National Center but is managed by a common Ofc of for Public Health the Director with NCEH Informatics National Center for Preparedness, Detection & Control of Infectious Diseases

    3. National Center for Chronic Disease Prevention and Health Promotion Office of the Director Associate Director for Science Associate Director for Policy Associate Director for Global Health Promotion Associate Director for Communications Science Associate Director for Program Development Associate Director for Medical Affairs Office of Public Health Genomics Division of Adolescent and School Health Division of Cancer Prevention and Control Division of Adult and Community Health Division of Diabetes Translation Division of Heart Disease and Stroke Prevention Division of Oral Health Division of Reproductive Health Office on Smoking and Health Division of Nutrition and Physical Activity

    4. Division of Cancer Prevention and ControlNational Center for Chronic Disease Prevention and Health Promotion Coordinating Center for Health Promotion

    5. Cancer Surveillance BranchHome of the National Program of Cancer Registries

    6. Cancer Surveillance • Cancer is the leading cause of death in the U.S. before age 85 • Cancer Registry Amendment Act, 1992, authorized CDC to establish the National Program of Cancer Registries (NPCR) • Cancer is the only reportable chronic disease and the only chronic disease for which we have national incidence data • The goal of central cancer registries is to collect standardized data on all cancer diagnoses

    7. Benign Brain Tumor Cancer Registries Amendment Act • Legislation passed October, 2002 • Amendment to the Public Health Service Act authorizing NPCR (PL 102-515) to provide for the collection of data on benign brain-related tumors • Implementation: Cases diagnosed on or after 1/1/2004

    8. LA CA KY National Program of Cancer Registries NPCR* Seattle/Puget Sound SEER † NPCR & SEER Detroit CT IA San Francisco/ Oakland NJ UT San Jose/ Monterey Los Angeles NM Atlanta HAWAII REPUBLIC OF PALAU ALASKA PUERTO RICO *National Program of Cancer Registries (CDC) †Surveillance, Epidemiology, and End Results Program (NCI) VIRGIN ISLANDS

    9. Guide planning, implementation, and evaluation of cancer control programs at a national, local and state level Describe cancer patterns in special populations and investigate rare cancers Identify and document disparities Provide data for prioritization of health resources Advance clinical, epidemiologic, and health services research Value of National Cancer Surveillance

    10. Scope of CDC Cancer Surveillance • Cancer Surveillance System • Data on approximately 1.2 million new invasive cancer cases are submitted to CDC each year • Includes data on approximately 13 million invasive cancer cases diagnosed during 1995–2005 • 96% coverage of U.S. population with NPCR • 100% NPCR and NCI-SEER combined

    11. to set standards for data completeness, timeliness, and quality. Cancer Registry Amendment Act, 1992Public Law 102-515

    12. NPCR Program Standard forElectronic Data Exchange • 95% of reports from hospitals • 85% from non-hospital reporting sources • 75% from physician offices

    13. Data Flow Health Facilities States

    14. Local data uses • State • State cancer incidence reports • Comprehensive Cancer Control Plans • Response to state-level inquiries and requests • Assess disease risks, detection, and treatment locally

    15. National and Regional Data Use • NPCR data – CDC submission • United States Cancer Statistics, USCS • Wonder • State Cancer Profiles • Report to the Nation • Monographs

    16. National cancer statistics 96% Population Coverage Collaboration, CDC, NCI, NAACCR State, regional, and national data Rates for whites, blacks, Asians/Pacific Islanders (A/PI), American Indians/Alaska Natives (AI/AN), Hispanics, and children United States Cancer Statistics http://www.cdc.gov/uscs

    17. CDC WONDERWide-ranging Online Data for Epidemiologic Research • Menu-driven system which provides interactive access to NPCR data • Users can obtain reports containing age-adjusted rates, crude rates, and case counts. • Allows greater flexibility in generating reports than was previously available. • http://wonder.cdc.gov/cancer.html

    18. Interactive Cancer Atlas • Web-based, interactive geographical information system (GIS) application • Generates customized maps using data from the USCS data. • Displays incidence and death counts and rates by cancer site, gender, year of diagnosis, etc. • Comparisons across geographic areas. • Using the trend data player, users can see how the data changed over the years. • In addition, users can download and print data for the selected event attributes

    19. Update of death and incidence cancer rates 2008 report First time report documented decline in cancer incidence Special focus on tobacco-related cancers State and regional differences in lung cancer trends Collaboration between CDC, NCI, North American Association of Central Cancer Registries (NAACCR), ACS Annual Report to the Nation

    20. Collaboration with Office of Smoking and Health Findings emphasize need for ongoing surveillance Identify populations at greatest risk Evaluate effectiveness of targeted tobacco control programs and policies MMWR Surveillance Summary

    21. Cancer Monographs HPV Associated Cancers • Baseline data to measure the impact of HPV vaccine and cervical cancer screening programs • More HPV-associated cancers appear in the cervix than any other site-about 10,800 a year • About 7,400 potentially HPV-associated cancers of the oral cavity and oropharynx per year

    22. Alabama Alaska Arizona California Colorado District of Columbia Florida Georgia Idaho Illinois Indiana Kentucky Louisiana Maine Massachusetts Michigan Missouri Montana New Jersey New York Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina Texas Vermont Washington West Virginia Wisconsin “Cancer in Five Continents”, 1998-2002 Data31 NPCR Registries (83% Population Coverage)

    23. Enhancement of registry data • Linkages • National Death Index • Insurance claims • National Breast and Cervical Cancer Early Detection Program (NBCCEDP) • Indian Health Service administrative data

    24. NPCR Data Linkage with the Indian Health Service Source: Native Women’s Breast and Cervical Health, August 2002 Artist: Virgil "Smoker" Marchand (Washington State Colville American Indian)

    25. Patterns of Care (PoC) Studies • Institute of Medicine, 2000 “NPCR …has great potential to facilitate national, population-based assessments of the quality of cancer care …” • NPCR initiated patterns of care studies in 2002-03 • Enhance capacity of NPCR registries to use registry data to assess cancer care • Breast • Prostate • Colon • Ovary

    26. POC -1 • Initiated in 2003 • Data collection ended in 2006 • To date from the study group: • Several publications • Nine oral presentations • Four posters • Additional manuscripts are in preparation

    27. Ovarian PoC • Determine first course of treatment received • Specialty of treating physicians • Treatment outcomes • 1- and 3- year survival • Re-abstraction of charts • Information collected • Patient • Tumor • Treatment • Physicians/Facilities • Determine what proportion of patients received standard of care

    28. POC- BP • Study of treatment patterns and quality of cancer data • Third and most comprehensive POC study from CDC-NPCR • Involves cancer registries in seven states • CA (two regional), GA, KY, LA, NC, MN, WI • Approximately 28,000 patients • Data collection has ended • Data is being cleaned and analytic dataset being prepared for analyses

    29. Research /Surveillance Research • Annual Report to the Nation • Surveillance Summary - MMWR • Monographs • An update on cancer in American Indian/Alaska Native • Assessing the burden of HPV-associated cancers in the United States • POC studies • Other research papers • Cancer in five continents

    30. Contact Information Linda Mulvihill epe9@cdc.gov 770-488-3246

    31. HHS and CDC Collaborations • National Breast and Cervical Early Detection Program • National Comprehensive Cancer Control Program • Office of Smoking and Health (NCCDPHP) • Office of Women’s Health • Division of Sexually Transmitted Disease Prevention • Division of Oral Health • National Center for Environmental Health • National Center for Health Statistics • National Cancer Institute • Agency for Health Care Research and Quality • National Center for Public Health Informatics • Agency for Toxic Substance and Disease Registry • Indian Health Service

    32. External Collaborations • National Cancer Registrars Association • American Cancer Society • American Joint Committee on Cancer • Central Brain Tumor Registry of the United States • College of American Pathologists • North American Association of Central Cancer Registries