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CPCRN MeetingCPCRN Meeting
Linda MulvihillCancer Surveillance Branch
Division of Cancer Prevention and Control
October 2009
Linda MulvihillCancer Surveillance Branch
Division of Cancer Prevention and Control
October 2009
Department of Health and Human Services
Centers for Disease Control and Prevention
Office of theDIRECTOR
Coordinating Officefor Global Health
Coordinating Officefor Terrorism
Preparedness &EmergencyResponse
CoordinatingCenter for
EnvironmentalHealth and Injury
Prevention
CoordinatingCenter for HealthInformation and
Services
Coordinating
Center for Health
Promotion
CoordinatingCenter forInfectiousDiseases
National Center forEnvironmental
Health/Agency forToxic Substances &Disease Registry*
National Centerfor HealthMarketing
National Centeron Birth Defects &
DevelopmentalDisabilities
National Center
National Center forInjury Prevention
and Control
National Centerfor HealthStatistics
National Centerfor Chronic
DiseasePrevention and
Health Promotion
National Center forZoonotic,
Vector-Borne& Enteric Diseases
National Centerfor Public Health
Informatics
for Immunization &
National Institutefor Occupational
Safety and Health
*ATSDR is an OPDIV within DHHSbut is managed by a common Ofc of
the Director with NCEH
National Center forPreparedness,
Detection & Controlof 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 forGlobal 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 ControlNational Center for Chronic Disease Prevention and Health Promotion
Coordinating Center for Health Promotion
Office of the Director
CancerSurveillance Branch
Comprehensive CancerControl Branch
Epidemiology andApplied Research Branch Program Services Branch
Office of Program andPolicy Information
Office of ManagementAnd Operations
Office of ColorectalCancer Programs
Cancer Surveillance BranchHome of the National Program of Cancer
Registries
Office of the ChiefChristie EhemanFrances 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 102-515) 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
PUERTORICO VIRGIN
ISLANDS
ALASKA
Atlanta
Detroit
San Francisco/Oakland
LosAngeles
San Jose/Monterey
Seattle/Puget Sound
CT
NM
UT
IA
NJ
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 1995–2005 96% coverage of U.S. population with NPCR 100% NPCR and NCI-SEER combined
Cancer Registry Amendment Act, 1992Public Law 102-515
to set standards for data completeness, timeliness, and quality.
NPCR Program Standard forElectronic 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
http://www.cdc.gov/uscs
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
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”, 1998-2002 Data31 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 2002-03
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 InformationContact Information
Linda Mulvihillepe9@cdc.gov770-488-3246
Linda Mulvihillepe9@cdc.gov770-488-3246
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
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