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

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

Division of Cancer Prevention and Control National Center for Chronic Disease Prevention and Health Promotion Coordinating Center for Health Promotion

Cancer Surveillance Branch Home of the National Program of Cancer Registries Office of the Chief Christie Eheman Frances Michaud Operations Research and Technical Assistance Team (ORTAT) Linda Mulvihill (Acting) Data Analysis and Support Team (DAST) Joe Rogers Surveillance Research Team (SRT) Umed Ajani Data Enhancement, Evaluation and Promotion Activity Cheryll Thomas

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

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

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

Value of National Cancer Surveillance  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

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– % coverage of U.S. population with NPCR 100% NPCR and NCI-SEER combined

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

NPCR Program Standard for Electronic Data Exchange 95% of reports from hospitals 85% from non-hospital reporting sources 75% from physician offices

Data Flow Health Facilities States

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

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

United States Cancer Statistics  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

CDC WONDER W ide-ranging On line D ata for E pidemiologic R esearch  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. 

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

Annual Report to the Nation  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

MMWR Surveillance Summary  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

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

“Cancer in Five Continents”, Data 31 NPCR Registries (83% Population Coverage)  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

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

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)

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 Enhance capacity of NPCR registries to use registry data to assess cancer care  Breast  Prostate  Colon  Ovary

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

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

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

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

Contact Information Linda Mulvihill

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

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